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Lindsay GFMom

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About Lindsay GFMom

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  1. This is very helpful, thank you. But what would you do if your kiddo showed no symptoms when he was on dairy? As I understand it, gluten can do long term damage but dairy can't....i.e. if the dairy is a problem, you'll want to go back off of it because it's causing you trouble, not because you're doing huge bodily harm. You're right that it is casein (if that's what Enterolab shows...I didn't even know that and I appreciate knowing!)...but why should he continue to stay away from it if it doesn't seem to bother him? Gluten doesn't seem to bother him either, but I "get" that we must keep him away from that....I just don't understand the reasons for staying away from casein. Thanks for helping to educate me!
  2. Per Enterolab, my son is gluten and dairy intolerant and has the Celiac gene. He has been gluten and dairy free for six months. He has never really had any symptoms of gluten or dairy intolerance. I've read that dairy intolerance is often secondary to gluten intolerance and that after you've been off of both for several months (or a year) that it's often okay to go back on dairy. (But not gluten!) I'd really like to get him back on dairy. He hasn't gained any weight since we went gluten-free/cf and it's hard to get adequate calcium. Have others been in this situation and put their kids back on dairy? Since he had no symptoms prior to going off the dairy, I'm assuming he likely won't have any symptoms when he is put back on. So I won't know if it's harming him in some way. Any thoughts? Thanks.
  3. My 4.5yo son was dxed gluten/dairy intolerant & has the gluten AND Celiac gene by Enterolab testing. We just got blood test results from Prometheus lab: AGA IgG 0.7 U/ml (normal <10.0) AGA IgA 1.3 U/ml (norm <5.0) TTG IgA 0.3 U/ml (norm <4.0) EMA IgA negative TOTAL IgA 171 mg/dl (norm for ages 3-13: 41-395, norm for ages <3: 8-220) HLA DQ8 detected (Celiac gene) Although these results are technically negative for active Celiac disease, someone told me that any reading above zero means that something is going on ...and that it isn't good. Has anyone else heard this?
  4. Our 4yo had these results from Enterolab: Fecal Antigliadin IgA 29 (Normal Range <10 Units) Fecal Antitissue Transglutaminase IgA 21 Units (Normal Range <10 Units) Quantitative Microscopic Fecal Fat Score <300 Units (Normal Range <300 Units) Fecal anti-casein (cow
  5. It took 2 weeks to get our results. We sent them on a Monday and we had the results first thing in the a.m. exactly 2 weeks later on Monday. We did the full test tho--gluten, dairy, and gene. Good luck!
  6. I'm in the middle of reading "Gut and Psychology Syndrome" by a doctor from the UK. Her son had autism and she started on a quest to heal him. In the process, she noticed the connection between gut issues and a lot of prevalent problems with kids--ADD, ADHD, autism spectrum issues, etc... She advocates for a much more rigorous diet for these kids than just gluten-free/CF. Has anyone read the book and/or used the SCD diet? Especially for a kid with gluten intolerance and/or Celiac?
  7. Ironically, my son was born in South Korea. I've heard that it's unusual for people of Asian descent to have the Celiac gene. Don't know if that's true. I wish I knew more. I guess it seems like statistics on Asians and Celiac gene may be iffy...if you rarely eat gluten, your chance of developing full-blown Celiac would be less, so even if you have the gene you may not develop Celiac disease...or ever get tested to reveal that it's more prevalent in one ethnic group than most people think. If anyone knows anything about the prevalence of the Celiac gene in people of Asian descent, I'm all ears!
  8. Thank you SO MUCH to everyone who responded to my questions. It's very helpful to know that others have also had asymptomatic kids who turned out to test blood +. Next week he goes in for the blood test. The interesting thing is that it's been very obvious that we have a gluten problem based on his behavior when we went back to a gluten diet in prep for the test. I'll be very happy to get him back off of it next week. We have decided to test as this is our opportunity. If we ever want to know, now it the time. I don't anticipate putting him on gluten again and certainly don't want to have to do 6 months of it for an accurate test. I'm just hoping that this test will tell us what we need to know so that our ped will take us seriously. If nothing else, I'm prepared to just do it and ignore the ped. Again, thanks so much for your stories. They were VERY helpful.
  9. I'm very interested to know whether we're wasting our time and unnecessarily traumatizing our son with a blood test. Here's our story. I'd love to have feedback... Our 4.5yo son was just dxed with both gluten & dairy intolerance per Enterolab. Also with both Celiac and gluten intolerant genes. But he currently has no symptoms other than dropping off in growth %. He has no gut issues that we're aware of other than very occasional mention of tummy ache. Stool is normal. No swollen tummy. He does, however, have anxiety issues (although these could be explained by several moves when he was young due to adoption.) I don't know if it's related, but he went back on gluten 48 hrs. ago and has had one loose stool (not normal for him) and has had several bouts of crying/screaming. He also said his tummy hurt after dinner last night. I hate that we have to put him on gluten again just to get ready for the blood test. We met with both our pediatrician and our naturopath. To no surprise, we got very different responses. Ped said: The fact that he was steadily at 75-90% on the growth chart til age 12 months (when, coincidentally, he would have started gluten) and then dropped to 15% doesn't necessarily indicate a problem. Kids "find their number" over time. He acknowledged that it "could" indicate something, but he didn't think so. He'd never heard of Enterolab and couldn't interpret the results. He suggested a blood test for Celiac and other allergies. I showed him the 5 part Celiac test from Prometheus Lab, which he'd not heard of (he'd heard of 3 or 4 of the parts, but not 5...he was very interested.) He agreed to ship a blood test to Prometheus where we'll have the 5 part screening for Celiac done along with other major allergens. When I reminded him how traumatic this could potentially be (to draw blood--we're not doing this twice!), he agreed that for best possible results we should put him back on gluten for 2 weeks since we've been gluten-free for 2.5 weeks. (I emailed & called Prometheus about this and got 2 different answers. One guy said we should currently be on gluten; the other said that 2.5 weeks off wouldn't hurt. I'm going with the conservative answer.) Ped said that if this test comes back negative (which I anticipate it will as he doesn't have active symptoms of Celiac disease), he would put him back on gluten and disregard anything to do with his growth chart. That's not going to happen. As a side note, I believe that he's grown in the last 3 weeks. We keep marks on his door; the marks have changed in a month. Of course this is hard to prove since it's been a short time and obviously he can't have grown tons, but it does look different. At the doc's office, his height was up to 25%....earlier it was 15%. Naturopath said: No problem with doing the blood test. More info is good. He agreed with me that irregardless of the blood test results that we need to try to keep him off gluten for a year and see if his growth rate changes. We'll keep him off dairy, too, but in a year we can test again and he may be able to tolerate it if his gut heals adequately. IF his Celiac blood test is negative, in a year we'll discuss the possibility of using enzymes to allow him to occasionally (think "birthday party once a year" type thing) have a gluten indulgence. But we agreed that because he is currently gluten intolerant (showing gut damage) and because he has the Celiac gene, he really needs to be gluten free for life. It was eye opening to me to see the Enterolab results of an adult on this site that almost matched our son's results exactly. (If anything, our son's results were slightly worse.) If my son continues to get gluten, eventually he could end up with very similar results. I guess I'm not willing to take that chance. Enterolab responded to my question about whether their results indicate Celiac or not: "The results do not indicate active Celiac Disease due to the fact that his fecal fat score was within normal range. If that score had been positive, your practitioner would have all the diagnostic evidence necessary to give a Celiac Diagnosis. Basically, his gluten sensitivity has not progressed to the point of full blown Celiac, but if you chose not to take him off gluten, this could happen. Digestive enzymes are helpful for some individuals, but sometimes they only help in the first 3 months or so of taking them. There are two different companies researching an enzyme specifically for gluten now, so perhaps we will see this helpful supplement in the near future. Dr. Fine does not recommend ever going back to a diet containing a food to which you have tested immunologically sensitive. This is because the level of severity can change and the symptoms can change the longer you are off of that food. You can even become asymptomatically sensitive, but you can still incur damage to the intestine even if you are not outwardly exhibiting symptoms." ******* What this tell me is that the blood test for Celiac Disease is almost sure to come back negative. The pediatrician will declare all is well. The naturopath will agree with Dr. Fine at Enterolab. I do too, but it's harder to convince dh once he's heard the pediatrician! We do agree (dh & I--not the ped!) that we must keep him off gluten for a year to see what happens with growth. After that I believe he must continue to remain off gluten. I cannot knowingly feed him something that could be long-term harmful. I would be fascinated to know if anyone else has ever had a child dxed as gluten intolerant by Enterolab who didn't show any obvious gut symptoms. I don't know why anyone would chose to be tested if they didn't have symptoms, but there must be other people out there who are in the same boat as we are. I hate the fact that we're putting him through a blood test that will likely turn out negative, but I'm consoling myself with the fact that it's probably a good idea to go ahead and do other allergy testing at the same time. And, if we don't blood test now, we probably won't ever be able to since it would mean going back on gluten for a long period of time. Thoughts on what we're doing?
  10. Our 4.5yo son was dxed with both gluten & dairy intolerance per Enterolab. Also with both Celiac and gluten intolerant genes. But he currently has no symptoms other than dropping off in growth %. (He has no gut issues that we're aware of other than very occasional mention of tummy ache.) Yesterday we met with both our pediatrician and our naturopath. To no surprise, we got very different responses. Ped said: The fact that he was steadily at 75-90% on the growth chart til age 12 months (when, coincidentally, he would have started gluten) and then dropped to 15% doesn't necessarily indicate a problem. Kids "find their number" over time. He acknowledged that it "could" indicate something, but he didn't think so. He'd never heard of Enterolab and couldn't interpret the results. He suggested a blood test for Celiac and other allergies. I showed him the 5 part Celiac test from Prometheus Lab, which he'd not heard of (he'd heard of 3 or 4 of the parts, but not 5...he was very interested.) He agreed to ship a blood test to Prometheus where we'll have the 5 part screening for Celiac done along with other major allergens. When I reminded him how traumatic this could potentially be (to draw blood--we're not doing this twice!), he agreed that for best possible results we should put him back on gluten for 2 weeks since we've been gluten-free for 2.5 weeks. (I emailed & called Prometheus about this and got 2 different answers. One guy said we should currently be on gluten; the other said that 2.5 weeks off wouldn't hurt. I'm going with the conservative answer.) Ped said that if this test comes back negative (which I anticipate it will as he doesn't have active symptoms of Celiac disease), he would put him back on gluten and disregard anything to do with his growth chart. That's not going to happen. As a side note, I believe that he's grown in the last 3 weeks. We keep marks on his door; the marks have changed in a month. Of course this is hard to prove since it's been a short time and obviously he can't have grown tons, but it does look different. At the doc's office, his height was up to 25%....earlier it was 15%. Naturopath said: No problem with doing the blood test. More info is good. He agreed with me that irregardless of the blood test results that we need to try to keep him off gluten for a year and see if his growth rate changes. We'll keep him off dairy, too, but in a year we can test again and he may be able to tolerate it if his gut heals adequately. IF his Celiac blood test is negative, in a year we'll discuss the possibility of using enzymes to allow him to occasionally (think "birthday party once a year" type thing) have a gluten indulgence. But we agreed that because he is currently gluten intolerant (showing gut damage) and because he has the Celiac gene, he really needs to be gluten free for life. It was eye opening to me to see the Enterolab results of an adult on a this site that almost matched our son's results exactly. (If anything, our son's results were slightly worse.) If my son continues to get gluten, eventually he could end up with very similar results. I guess I'm not willing to take that chance. Enterolab responded to my question about whether their results indicate Celiac or not: "The results do not indicate active Celiac Disease due to the fact that his fecal fat score was within normal range. If that score had been positive, your practitioner would have all the diagnostic evidence necessary to give a Celiac Diagnosis. Basically, his gluten sensitivity has not progressed to the point of full blown Celiac, but if you chose not to take him off gluten, this could happen. Digestive enzymes are helpful for some individuals, but sometimes they only help in the first 3 months or so of taking them. There are two different companies researching an enzyme specifically for gluten now, so perhaps we will see this helpful supplement in the near future. Dr. Fine does not recommend ever going back to a diet containing a food to which you have tested immunologically sensitive. This is because the level of severity can change and the symptoms can change the longer you are off of that food. You can even become asymptomatically sensitive, but you can still incur damage to the intestine even if you are not outwardly exhibiting symptoms." ******* What this tell me is that the blood test for Celiac Disease is almost sure to come back negative. The pediatrician will declare all is well. The naturopath will agree with Dr. Fine at Enterolab. I do too, but it's harder to convince dh once he's heard the pediatrician! We do agree (dh & I--not the ped!) that we must keep him off gluten for a year to see what happens with growth. After that I believe he must continue to remain off gluten. I cannot knowingly feed him something that could be long-term harmful. I would be fascinated to know if anyone else has ever been dxed as gluten intolerant by Enterolab who didn't show any obvious gut symptoms. I don't know why anyone would chose to be tested if they didn't have symptoms, but there must be other people out there who are in the same boat as we are. Thoughts on what we're doing? I hate the fact that we're putting him through a blood test that will likely turn out negative, but I'm consoling myself with the fact that it's probably a good idea to go ahead and do other allergy testing at the same time.
  11. I don't understand the number line either, but it looks like the subtypes are what count. I'm mostly going by the interpretation which they included on the same paper. Here's what it said. I bolded the part about Celiac: Serologic equivalent: HLA-DQ 3,1 (Subtype 8,6) Interpretation Of HLA-DQ Testing: HLA gene analysis reveals that you have one of the main genes that predisposes to gluten sensitivity and celiac sprue, HLA-DQ2 or HLA-DQ8. Each of your offspring has a 50% chance of receiving this gene from you, and at least one of your parents passed it to you. You also have a non-celiac gene predisposing to gluten sensitivity (DQ1 or DQ3 not subtype 8). Having one celiac gene and one gluten sensitive gene, means that each of your parents, and all of your children (if you have them) will possess at least one copy of a gluten sensitive gene. Having two copies also means there is an even stronger predisposition to gluten sensitivity than having one gene and the resultant immunologic gluten sensitivity or celiac disease may be more severe. Thanks for the blood test info. I'm calling this morning.
  12. Tupperware type containers. I did run them through the dishwasher. Is that adequate?
  13. I appreciate (so much!) the feedback I've gotten on my earlier post. I made my husband just sit down and read it all. We have not decided whether or not to do a Celiac blood test for our 4.5yo. (You'll recall that he has gluten & dairy intolerance as well as a gluten sensitive gene and the Celiac gene, per the Enterolab test.) I think I want to call my doctor tomorrow and ask some questions. I was told by a friend that the standard blood tests used in doctors offices are not very accurate for Celiac and that I should insist on a particular test. She didn't tell me what it's called, only said that Prometheus Lab is the place to send it. Can anyone explain to me the difference in blood tests and the name of the test I want to ask about? I'd like to ask our doctor if he uses the test and whether he would be willing to send it to Prometheus.
  14. Just to clarify, yes, he does have Celiac genes, although it doesn't specify whether he has #2 or #8.
  15. Really? The Celiac gene too? If you could tell me where the post is, I'd love to read it. Thanks everyone who has posted so far!
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