6 ms·

My daughter has Celiac disease. It was diagnosed at age 4 when her growth chart showed she did not gain a single pound and grew ¼" from age 3-4. We did a biopsy

by S_A_P 9y ago

My daughter has Celiac disease. It was diagnosed at age 4 when her growth chart showed she did not gain a single pound and grew ¼" from age 3-4. We did a biopsy of her small intestine and it was completely smooth. (Should be almost like velvet) Herblood levels also showed high sensitivity to gluten. We have her on a strict gluten free diet and she has since followed the growth chart perfectly. However she is sensitive enough that she can not eat gluten free food that has been prepared on the same grill/pan/cook or prep surface as food containing gluten. She suffers from nausea and diarrhea when cross contamination occurs. What this means is that I have to cook every meal she eats and bring it with us if we go to restaurants. We live in probably the best time ever for gluten free foods, but this is still a significant hardship for her. She is 7 now and I worry about as she gets older and wants to hang with friends/date/college. Unless things change she cannot just go grab food at a restaurant. Some restaurants have a gluten free protocol (PF changs comes to mind) but this is not common. From what I've read gut bacteria could be a contributor to gluten intolerance. I really hope studies like the peanut allergy encourage other dietary studies and immunotherapy becomes more common. Her having celiac disease is not the end of the world but her quality of life would change drastically if she didn't have to worry about that.

ljf 9y ago
Sorry to hear that - but I understand that Celiac disease it not an immune response in the same manner - so likely any treatment will be different to this - though as ever - probiotics and gut bacteria are worth a try. My wife has celiac disease too, and I really wouldn't worry too much - it is pretty damn easy to eat out now (in the UK, Europe and America at least) - and compared to 10 years ago, she can shop really simply and have high confidence when eating out. We've traveled widely, and it's not been an issue either - as long as you take notes in the language of the country you are going to: http://www.celiactravel.com/cards/ http://www.celiactravel.com/cards/ Plus - as horrible as a reaction is nothing compared to an allergic/anaphylactic response from ingesting a known allergen.
- S_A_P 9y ago
  You are right, this really is a great time(even though that sounds weird to put it that way) to have a food allergy. I think about even 10-20 years ago how hard it would be to eat gluten free at most places. Thank you for the link- travel is always something we "worry" about. Most of the time we bring an extra suitcase of non perishables that my daughter can eat in case we cant accommodate her diet. Another reason why I love this site, in the 6 or so responses from my post, Ive gotten lots of helpful info. Thanks to all of you!
  - pkaye 9y ago
    Sorry to hear about your daughter's healthy issues. For a while I've been dealing with food intolerance issues myself though things are much better now. One working theory I have is to have a high protein diet to build up the the lining of the gut. Maybe incorporate more high quality protein into your daughters diet and see if any improvement. I have no scientific evidence for this, just anecdotal experience... I don't think even doctors have all the answers based on those I dealt with.
ipunchghosts 9y ago
Are you familiar with ImmusanT Nexvax2? In a trial to treat celiac. http://www.immusant.com/patient-resources/clinical-trials.php http://www.immusant.com/patient-resources/clinical-trials.ph...
- S_A_P 9y ago
  Thanks for this! sounds very encouraging.
awinder 9y ago
One of my friends in high school had celiac & peanut allergies. The kids / schools were super accommodating, I know everyone is going to have different experiences but I wish you both a good life. I think for him it ended up being more of an issue while young, gaining the discipline to really know & explain to people his condition and how it was important they just know and think about it. On a certain level it creates an interesting dynamic into figuring out if people are really listening & absorbing knowledge, in a weird way it’s probably given him a very unique life experience. You’re also right to hope for better treatment paths for her future. Compared to even when we grew up the cultural knowledge of celiac is so much better. And since it’s something that’s been discovered to be not nearly as rare as once thought, the research dollars have caught up. These are all signs that point to a bright future :-)
nibstwo 9y ago
I have Celiac. Unfortunately immunotherapy is not currently done in a way that would make much of a difference for us. Celiac is typically an autoimmune response to Gliadin protein as a result of human leukocyte activation genes HLA-DQ2.2/2.5 or HLA-DQ8. In either case, it is happening at the cellular level for every cell that comes into contact with the protein. The intestines are hard hit mostly because they spend the longest time with exposure. I found for the first year or so I simply could not eat anything made by a restaurant or friend because of cross contamination. My resilience went up over time though, it takes a few years for inflammatory activation to come back down to a subclinical level even if the gut repairs in 3-6 months. Gut bacteria change in response to all the immune activity, but damping the immune response would not necessarily fix the issue of the protein destroying the cells it comes into contact with. The immune response is therefore not entirely autoimmune in nature but necessary to protect the cells. The vili are being destroyed directly, essentially. You could develop a drug that would dampen the immune response (I think a few others posted links) but you could not realistically get to a point where you can eat gluten. The antigen will always destroy your cells, autoimmune response or not. Sensitivity depends on how many (one or two) of the HLA genes you have that react with gluten. I have one out of two so my reactions are less severe (only 2-3 days with symptoms). If you have both Celiac HLA genes, it will always and consistently harm you.
- S_A_P 9y ago
  Thanks for this- it sounds like I need to do some more research to completely understand whats going on, but this is very helpful. If you dont mind my asking, are your symptoms mostly GI related? Ive heard others can have symptoms that manifest in things like sinuses getting plugged up or skin rashes. Also sounds like a drug similar to Humara may be something that could provide at least some relief to the immune response.
  - nibstwo 9y ago
    No. Mine were mostly cognitive. I mean, when I was a kid I had no tooth enamel (had to have surgery to install fake teeth) and puked up everything I ate that had wheat in it, but somehow no one diagnosed it until later. I just assumed it was normal but my symptoms were migraines, anxiety, stomach bloating, joint pain, hair loss, stunted growth, constant fatigue, sleep apnea, nutrient deficiencies, malabsorption. It took about a year to feel better. It used to be cross contamination would mean 3 days of pain, gluten 7 days. Now cross contamination is a worthy trade off for occasional meal out, and gluten is 2-3 days in small amounts. I shudder to consider eating a full bun or something but I haven't tried in years. I know within 10 minutes because the skin inside my mouth peels off. So I kind of have systems for managing it. I have a normal job and would say it has not really hindered me outside of eating a very strict diet. Having support from my partner also helps a great deal. It's good you caught it early.
will_brown 9y ago
>From what I've read gut bacteria could be a contributor to gluten intolerance. It wouldn't surprise me, the human microbiome (which includes bacteria) out numbers cells in the human body something like 100:1. They call it the second brain and just reading about some of the studies should be eye opening to many. For example, some mental health issues can be treated through the stomach and alternatively certain gasterointestinal issues can be treated via the brain. I recall one of the more interesting studies about twins in (equatorial) Africa where obviously both nature/nurture are identical but 1 twin will be malnurished while the other is not, the only measurable difference coming from the bacteria in the gut, which impacts the ability for the body to absorb nutrients. Truely sorry about you daughter and it seems you are keenly aware of the social impact of food. However, as someone who has self imposed restrictions it may be a blessing in disguise, because there is a very good chance greater than 10% of her peers will develop non alcoholic fatty liver disease during childhood, some childhood type 2 diabetes, and yet a significantly larger number will develop all kinds of health issues (including mental health problems) not even as of yet connected with food/nutrition. Admittedly, I'll sneak in a cheat meal and can eat at restaurants but most the time, just like most the food in grocery stores, I easily avoid because I view the same as poison. And while it may sound extreme, just look around at the people in the grocery or especially restaurants and honestly come to your own conclusion about the percentage of people who just look unhealthy.
- S_A_P 9y ago
  Agreed- and in the grand scheme of things celiac is a completely manageable and minor inconvenience. A lot of how I feel about it is more me projecting my sympathy/pity on her because she is always going to have to think about where/what she eats and how it can impact socializing. Even though she is young she generally has a great attitude about it, and I can even say it has benefitted me as I have become a much better cook by figuring out how to make delicious gluten free cuisine. Obviously rice based dishes are pretty easy, but when you are making fresh breads or things like fried chicken, just substituting a gluten free flour doesn't always come out very well.
- yerkan 9y ago
  > It wouldn't surprise me, the human microbiome (which includes bacteria) out numbers cells in the human body something like 100:1. Fake news! [1] [1] https://www.nature.com/news/scientists-bust-myth-that-our-bodies-have-more-bacteria-than-human-cells-1.19136 https://www.nature.com/news/scientists-bust-myth-that-our-bo...
pm90 9y ago
I really wish you and your family well. It can't be easy to accommodate her food habits; although I imagine after a while it becomes an (albeit difficult) habit. And I agree with her quality of life being affected. Hopefully, other restaurants will catch on, similar to how we label food that may contain peanuts.
AdmiralAsshat 9y ago
I've had several roommates with Ceiliac, and it can be a challenge, but it's not insurmountable. The biggest problem at first was, quite frankly, laziness on the part of other roommates in not cleaning up after themselves and leaving out a knife or cutting board that had been used to cut bread. It took a couple of talks and clear warning that no, this is not a joke, you will kill her if you continue to do this. We alleviated some of it by just chipping in to buy her a separate, labeled cutting board just for her. Hardship at restaurants is a common thing, when people are inflexible. I felt bad for her sometimes because her boyfriend would insist on going somewhere he wanted to go, even if she wasn't able to eat anything there beyond a salad. There will probably be more of an emphasis on cooking at home, but, even then, friends and roommates can be part of it if they're just willing to make a few simple tweaks. We even managed to make fried chicken that she could eat just by tracking down a gluten-free breading option. To boot, she's got about ten years or so before she's out on her own and this becomes her sole responsibility. My experiences are about five years old at this point, and we've already come a long way since then. In 2011, the most widespread "gluten free" option was Chipotle. Now, I see a gluten free menu at pretty much every sit-down restaurant I've gone to.

by S_A_P 9y ago

ljf 9y ago

Sorry to hear that - but I understand that Celiac disease it not an immune response in the same manner - so likely any treatment will be different to this - though as ever - probiotics and gut bacteria are worth a try. My wife has celiac disease too, and I really wouldn't worry too much - it is pretty damn easy to eat out now (in the UK, Europe and America at least) - and compared to 10 years ago, she can shop really simply and have high confidence when eating out. We've traveled widely, and it's not been an issue either - as long as you take notes in the language of the country you are going to: http://www.celiactravel.com/cards/ http://www.celiactravel.com/cards/ Plus - as horrible as a reaction is nothing compared to an allergic/anaphylactic response from ingesting a known allergen.

S_A_P 9y ago
You are right, this really is a great time(even though that sounds weird to put it that way) to have a food allergy. I think about even 10-20 years ago how hard it would be to eat gluten free at most places. Thank you for the link- travel is always something we "worry" about. Most of the time we bring an extra suitcase of non perishables that my daughter can eat in case we cant accommodate her diet. Another reason why I love this site, in the 6 or so responses from my post, Ive gotten lots of helpful info. Thanks to all of you!
- pkaye 9y ago
  Sorry to hear about your daughter's healthy issues. For a while I've been dealing with food intolerance issues myself though things are much better now. One working theory I have is to have a high protein diet to build up the the lining of the gut. Maybe incorporate more high quality protein into your daughters diet and see if any improvement. I have no scientific evidence for this, just anecdotal experience... I don't think even doctors have all the answers based on those I dealt with.

ipunchghosts 9y ago

Are you familiar with ImmusanT Nexvax2? In a trial to treat celiac. http://www.immusant.com/patient-resources/clinical-trials.php http://www.immusant.com/patient-resources/clinical-trials.ph...

S_A_P 9y ago
Thanks for this! sounds very encouraging.

awinder 9y ago

One of my friends in high school had celiac & peanut allergies. The kids / schools were super accommodating, I know everyone is going to have different experiences but I wish you both a good life. I think for him it ended up being more of an issue while young, gaining the discipline to really know & explain to people his condition and how it was important they just know and think about it. On a certain level it creates an interesting dynamic into figuring out if people are really listening & absorbing knowledge, in a weird way it’s probably given him a very unique life experience. You’re also right to hope for better treatment paths for her future. Compared to even when we grew up the cultural knowledge of celiac is so much better. And since it’s something that’s been discovered to be not nearly as rare as once thought, the research dollars have caught up. These are all signs that point to a bright future :-)

nibstwo 9y ago

I have Celiac. Unfortunately immunotherapy is not currently done in a way that would make much of a difference for us. Celiac is typically an autoimmune response to Gliadin protein as a result of human leukocyte activation genes HLA-DQ2.2/2.5 or HLA-DQ8. In either case, it is happening at the cellular level for every cell that comes into contact with the protein. The intestines are hard hit mostly because they spend the longest time with exposure. I found for the first year or so I simply could not eat anything made by a restaurant or friend because of cross contamination. My resilience went up over time though, it takes a few years for inflammatory activation to come back down to a subclinical level even if the gut repairs in 3-6 months. Gut bacteria change in response to all the immune activity, but damping the immune response would not necessarily fix the issue of the protein destroying the cells it comes into contact with. The immune response is therefore not entirely autoimmune in nature but necessary to protect the cells. The vili are being destroyed directly, essentially. You could develop a drug that would dampen the immune response (I think a few others posted links) but you could not realistically get to a point where you can eat gluten. The antigen will always destroy your cells, autoimmune response or not. Sensitivity depends on how many (one or two) of the HLA genes you have that react with gluten. I have one out of two so my reactions are less severe (only 2-3 days with symptoms). If you have both Celiac HLA genes, it will always and consistently harm you.

S_A_P 9y ago
Thanks for this- it sounds like I need to do some more research to completely understand whats going on, but this is very helpful. If you dont mind my asking, are your symptoms mostly GI related? Ive heard others can have symptoms that manifest in things like sinuses getting plugged up or skin rashes. Also sounds like a drug similar to Humara may be something that could provide at least some relief to the immune response.
- nibstwo 9y ago
  No. Mine were mostly cognitive. I mean, when I was a kid I had no tooth enamel (had to have surgery to install fake teeth) and puked up everything I ate that had wheat in it, but somehow no one diagnosed it until later. I just assumed it was normal but my symptoms were migraines, anxiety, stomach bloating, joint pain, hair loss, stunted growth, constant fatigue, sleep apnea, nutrient deficiencies, malabsorption. It took about a year to feel better. It used to be cross contamination would mean 3 days of pain, gluten 7 days. Now cross contamination is a worthy trade off for occasional meal out, and gluten is 2-3 days in small amounts. I shudder to consider eating a full bun or something but I haven't tried in years. I know within 10 minutes because the skin inside my mouth peels off. So I kind of have systems for managing it. I have a normal job and would say it has not really hindered me outside of eating a very strict diet. Having support from my partner also helps a great deal. It's good you caught it early.

will_brown 9y ago

>From what I've read gut bacteria could be a contributor to gluten intolerance. It wouldn't surprise me, the human microbiome (which includes bacteria) out numbers cells in the human body something like 100:1. They call it the second brain and just reading about some of the studies should be eye opening to many. For example, some mental health issues can be treated through the stomach and alternatively certain gasterointestinal issues can be treated via the brain. I recall one of the more interesting studies about twins in (equatorial) Africa where obviously both nature/nurture are identical but 1 twin will be malnurished while the other is not, the only measurable difference coming from the bacteria in the gut, which impacts the ability for the body to absorb nutrients. Truely sorry about you daughter and it seems you are keenly aware of the social impact of food. However, as someone who has self imposed restrictions it may be a blessing in disguise, because there is a very good chance greater than 10% of her peers will develop non alcoholic fatty liver disease during childhood, some childhood type 2 diabetes, and yet a significantly larger number will develop all kinds of health issues (including mental health problems) not even as of yet connected with food/nutrition. Admittedly, I'll sneak in a cheat meal and can eat at restaurants but most the time, just like most the food in grocery stores, I easily avoid because I view the same as poison. And while it may sound extreme, just look around at the people in the grocery or especially restaurants and honestly come to your own conclusion about the percentage of people who just look unhealthy.

S_A_P 9y ago
Agreed- and in the grand scheme of things celiac is a completely manageable and minor inconvenience. A lot of how I feel about it is more me projecting my sympathy/pity on her because she is always going to have to think about where/what she eats and how it can impact socializing. Even though she is young she generally has a great attitude about it, and I can even say it has benefitted me as I have become a much better cook by figuring out how to make delicious gluten free cuisine. Obviously rice based dishes are pretty easy, but when you are making fresh breads or things like fried chicken, just substituting a gluten free flour doesn't always come out very well.
yerkan 9y ago
> It wouldn't surprise me, the human microbiome (which includes bacteria) out numbers cells in the human body something like 100:1. Fake news! [1] [1] https://www.nature.com/news/scientists-bust-myth-that-our-bodies-have-more-bacteria-than-human-cells-1.19136 https://www.nature.com/news/scientists-bust-myth-that-our-bo...

pm90 9y ago

I really wish you and your family well. It can't be easy to accommodate her food habits; although I imagine after a while it becomes an (albeit difficult) habit. And I agree with her quality of life being affected. Hopefully, other restaurants will catch on, similar to how we label food that may contain peanuts.

AdmiralAsshat 9y ago

I've had several roommates with Ceiliac, and it can be a challenge, but it's not insurmountable. The biggest problem at first was, quite frankly, laziness on the part of other roommates in not cleaning up after themselves and leaving out a knife or cutting board that had been used to cut bread. It took a couple of talks and clear warning that no, this is not a joke, you will kill her if you continue to do this. We alleviated some of it by just chipping in to buy her a separate, labeled cutting board just for her. Hardship at restaurants is a common thing, when people are inflexible. I felt bad for her sometimes because her boyfriend would insist on going somewhere he wanted to go, even if she wasn't able to eat anything there beyond a salad. There will probably be more of an emphasis on cooking at home, but, even then, friends and roommates can be part of it if they're just willing to make a few simple tweaks. We even managed to make fried chicken that she could eat just by tracking down a gluten-free breading option. To boot, she's got about ten years or so before she's out on her own and this becomes her sole responsibility. My experiences are about five years old at this point, and we've already come a long way since then. In 2011, the most widespread "gluten free" option was Chipotle. Now, I see a gluten free menu at pretty much every sit-down restaurant I've gone to.