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melblondin

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  • Gender
    Female
  • Interests
    Running, reading, advocating for Compassion International, tennis, rollerblading
  • Location
    Michigan

melblondin's Achievements

  1. Hi everyone -

    I've been distant for awhile because life's just been busy, but I wanted to pop back again to report that all 3 of my boys are growing again!!! To recap briefly, my 3 year old had "weak positive" bloodwork for celiac, iron deficient anemia, and failure to thrive, while my 5 year old had neg. celiac bloodwork, but had elevated liver enzymes and was also failure to thrive. And then my 1 year old back in July had started in the 75th percentile at 3 months and by a year had fallen off the bottom of the growth chart, had SEVERE reflux, and very weird stool while on gluten.

    As of June 4th, due to the 3 year olds bloodwork, all the other symptoms put together, knowing that I am DQ 2.5 positive, and just having that mommy instinct, I took them all off of gluten completely. I've been tracking their weight on a weekly basis since June 4th and I'm so happy to say that they are all back on the growth charts. The baby and the oldest are in the 25th - 30th percentiles now and the 3 1/2 year old is just above the 12th. My youngest has gained 6 pounds since June and the other two have put on just above 3 pounds. Not to mention no more tummy aches, normal stool for all of them, energy abounds, and their cheeks are not flaming red anymore. I am so excited to see them happy and healthy again. :D

    Thanks to all for the encouragement and wisdom that is shared here. It's a big help to those of us on the journey to figuring all of this out!

  2. I would tell the camp counselor about this and use peanut allergy as an example. My son works at a day camp and the kids fight over who will he sit by to eat lunch. Maybe, a counselor can sit nearby to make sure this stuff doesn't go on. 5 year olds don't understand the damage the crumbs can cause. They need to understand that you don't touch other people that way. They would have done this with a kid who just didn't like the crackers so didn't want to eat them. Hope he is having fun otherwise. Wish he was with my son, he understands and would help him.

    Yeah - I did talk to the counselors. I totally understand that the child had no idea how the food would affect my son; the bullying aspect of it is what bothered me more than anything. I''m sure things will be fine now and he is having a great time overall :-). I was just surprised that kids that young really care about what each other is eating/not eating. I realize it could have been over anything - it just happened to be around what I call his "kryptonite!" I'm sure this won't be the first time things like this happen, so I guess it's good practice!

  3. Soooo, my son is at a Day Camp this week. Things have been going very well. I've packed his lunch and extra snacks for when they do that sort of thing and he knows to only eat what I've packed. However, yesterday there was another 5 year old who apparently couldn't understand why DS couldn't eat the graham cracker snacks that had been provided. He and another kid were waving it around DS and telling him to just take a bite, so DS said, "Please stop doing that." One of the boys stopped, while the other one crammed the graham cracker against DS's mouth!! Who does that!?! DS said, "Mom I just went like this (and pursed his lips together really hard)." I told him he did a really great job handling the situation and protecting his body, but several hours after picking him up from camp he proceeded to have several rounds of diarrhea. I'm not crazy to believe it was from the graham cracker crumbs on his lips, correct? I really just don't understand why it bothers other people so much when we choose not to eat or really just can't eat certain foods -- even at 5 years old! Craziness!!!!

  4. One thought is to have them all do the genetic testing. It wouldn't give them an official diagnosis, but it might help you know which kids to watch more closely and to have blood screens done on every couple years or so. My doctor and I think that I have celiac disease (couldn't be officially tested because I was already wheat free from a wheat allergy, but carry DQ 2.5 and have all the symptoms plus resolution once gluten-free) and one of my children has positive bloodwork. We're planning on doing genetics with the other 3 at some point down the road just so we can get a better idea of who to watch more closely. I did mine through Prometheus and thought they did a great job. Although, I think with having a 1st degree relative with a positive diagnosis, they're supposed to get screened every few years anyway. Good luck and welcome aboard!

  5. Man I'm hoping we get to see some of this growth too!! All 3 of my boys are in about the 5th percentiles, but I just took my 1 year old in for his well child and at 4 mths he was 75th for weight, at 8 mths he dropped to the 10th, and now at 1 year he dropped again to the 5th :huh: He's been gluten free since the 8 month appt., so I was hoping for a little more growth than what we saw. His height curve dropped to WELL BELOW the bottom of the chart. He's sensitive/allergic to milk, so any ideas for high fat/high calorie foods that I could give him. I'm already trying egg yolks and avocados. I want to figure this out before he wastes away in front of me :( Thanks everyone!

  6. If I had to guess, I'd say you have DQ 2.2 because I also did the Prometheus testing and mine came back as "DQ2 heterozygous," which put me in a "high" risk category. At the bottom of my report where it lists what alleles were detected it stated: DQ2.5 (HLA DQA1*05:DQB1*0201) and other non-risk alleles. I'm assuming the only thing that separates the "DQ2 Heterozygous" and the "DQ2/other low risk gene" categories are the subtypes. Please correct me if I'm wrong though!!

  7. Has anyone experienced migraines after going gluten-free? I've never had a migraine before in my life but was just hit with a terrible one last night complete with auras and everything. As far as I know I've been gluten free but maybe some sneaked in somewhere. The only thing I can think of is possibly my thyroid meds that I take everyday (Levothyroxine by Sandoz). I've tried looking into them, but haven't been able to get an answer yet. Does anyone else know about that company or experienced something similar?

  8. Just wondering if you ever found out anything more? My 3 year old was just diagnosed with "weak positive" bloodwork and slight anemia among many other symptoms. My other son is 5 and we put him on a gluten-free diet since he also shows symptoms although his celiac panel was in range. His liver enzymes were elevated though and I know that I am DQ2.5 positive, sooooo I'm going to be proactive and hope we just catch it early.

  9. Thanks for the excact wording.

    This was the new deamidated gliadin test, and the antigliadin IgG and antigliadin IgA test.

    The deamidated gliadin test is very new and only some labs have started to use it.

    Dr. Ford in NZ has commented on it too, you can google ford gluten.

    Nora

    Oh wow, Nora, thank you so much for pointing that out. From what I'm reading online, it looks like the deamidated IgG test has a 98.6% specificity rate. I guess that puts an end to my wondering if it was truly positive bloodwork for celiac! I was originally thinking that that number was sensitive to gluten, but not specific for celiac, but I hadn't realized it was a diff. test than the old one for IgG. Thanks for clearing that up for me!!!!!!!! It's looking to me like we've caught it early on, which I'm so thankful for.

  10. The test results for IgA and IgG might just be the total IgA and total IgG, as it did not say what kind of IgA or IgG was done.

    In that case, the total IgA was well below the range.

    Better to check out what tests really were done.

    As far as I know, he wasn't tested for total IgA and IgG. The exact wording is:

    Gliadian (deamidated) AB, Eval

    Gliadin AB IGG

    Gliadin AB IGA

  11. Microcytic anemia is the usual type of anemia associated with celiac disease.

    It is much easier to intrepret more specific tests. My first blood test was a Celiac Panel and included tests for anti - glaidin, anti-tissue transglutaminase and nowdays a Celiac Panel includes an endomysin test.

    What's more important than convincing the DRs that your child has celiac disease is your conviction that he must learn to lead a gluten free life. He has the symptoms and does better gluten free. If you now order the genetic marker test and they are positive for a predisposition to develop celiac disease then you have evidence that this is the problem. There are several labs online where you can order the genetic tests, I used Enterolab.com. In addition Enterolab can do the specific antibody tests on feces which are more sensitive and accurate than the blood tests and also test for food allergies and fecal fat levels. Their website has lots of information.

    My doctor actually is convinced that he has celiac. I just wasn't sure if technically speaking we could come to that conclusion by most medical standards w/o pos. bloodwork and/or a biopsy. I also believe that he has celiac, but there's part of me that wants to know for sure whether it's a gluten sensitivity or an AI disorder. I know it doesn't really make a difference as far as his diet is concerned; I guess I'm just curious.

    We do suspect that he carries one of the genes for celiac because I recently tested positive for DQ 2.5 At some point we would like to do the genetic testing for him as well.

    Thanks for the point on the anemia. I thought that was the case that that type of anemia is strongly assoc. with celiac disease, which is another confirmation that we're on the right track.

  12. My son was diagnosed as celiac today. He definitely manifests many if not all of the classic symptoms for children, so we are going to go gluten free as we have already seen improvement, but I have a question regarding his bloodwork because as I understand it, without IgA being positive and/or a pos. scope, he can't officially be diagnosed as celiac, correct?

    At 1 and a half yrs of age were:

    IGG 19.9 (20.0-30.0 weak positive)

    IGA 2.3 (<20.0 negative)

    TTG IgA .2 (ref. range 0.0 - 10.0)

    (No total IgA was drawn, so I don't know if he's deficient or not)

    At 3 yrs. old they are:

    IGG 16.0 (<20.0 negative)

    IGA 7.2 (<20.0 negative)

    TTG IgA 2.4 (ref. range <4.0)

    My questions are:

    1) Is it normal for someone's TTG IgA to be increasing over time?

    2) Can we get a total serum IgA count while being gluten free?

    Also, his complete blood count revealed slight microcytosis (iron deficient anemia as I understand it) and a slightly elevated neutrophil level.

    Thanks for your help!!

  13. I have posted before about my 3-year old, whose primary symptom that we have been following is her lack of growth and weight gain. She's almost 3.5 yrs old, still weighs 27 lbs (and has for the last 6+ months); she is 34 inches tall. This puts her at 10th percentile for weight, 3rd percentile for height. The pedi did some labs for her, including serum IgA and Ttg, which have apparently come back in the "normal range", though I don't have specific numbers to give as reference.

    She also has some belly pain, frequent BMs (3-6/day), has vomitted a few times, extreme irritability and very fluctuating moods, bruising, etc. We have a history of autoimmune in our family (my husband has Hashimoto's thyroiditis, my mother has Lupus/Rheumatoid Arthritis).

    So my question: have any of your little ones had a similar story where your child had issues like this, and had normal labs, but was still diagnosed or benefitted from a gluten-free diet? I'm heavily contemplating gluten-free, and plan on discussing it with her dr. at our next f/u (when she will get re-measured/weighed for progress checks). I don't want to jump straight to gluten-free on my own without the dr being aware of it; primarily due to how closely and attentive our pediatrician is at her care, and would like to follow her if she makes such a drastic nutritional change. But since her labs have come back negative, I was unsure if the doctors would never consider celiac disease again, or even the fact that something similar may be related to her growth issues/other symptoms? I have read several articles that mention that labs are not entirely accurate for kids her age, but now that they are negative, I am afraid they will just write her off as "the petite kid", even though she was not always at these percentiles....(my 14 month old is quickly catching up to her in clothes/shoe sizes as well as weight/height).

    Thanks so much for your input.

    My son is exactly the same. At his 2 year check up his labwork was inconclusive (like a point or two away from pos.) and now at his 3 year checkup they were normal, but he is also 3 1/2 yrs old and weighs about 27 pounds. He has tummy aches all the time, explosive BMs, and flaming red cheeks. I have issues with gluten too and just found out that I am DQ2.5 positive, so it gives us a little clue. We meet with our doctor on Thursday to see if we should just do a gluten free trial or have him get biopsied. There are a lot of false negatives for bloodwork in kids, so yes, your daughter still could have it. We accidentaly went gluten free for a day with him and then the next day he had gluten and it took him out completely. Even though our appt. isn't until next week, we're going gluten free until then to see what reaction we get. However if we do decide to get a biopsy he'd have to be on gluten. Good luck on your journey and keep us posted!

  14. Hi all -

    I don't want to be hyperparanoid about the possibility of my son having celiac, so I wanted to get your thoughts and see if this could possibly be a reaction or just a matter of coincidence. My son pretty much ALWAYS has flaming red cheeks, explosive, bulky stool, and frequent tummy aches. Well, the other night I noticed that his cheeks were a relatively normal color and started thinking through what he had eaten that day. It turns out that he had had a gluten free day except for some goldfish crackers at lunch. I am gluten free for a wheat allergy and probably celiac too, but hard to get a gold standard diagnosis with not having gluten in my diet. I am DQ2.5 positive, so I'm guessing I passed that lovely gene along to my son, but I don't know for sure. At any rate, the next morning, he had 2 bowls of Quaker oatmeal with barley in it (that had made me sick before) and within 20 min. or so of eating, he was rolling on the floor saying his tummy hurt, his face was flaming red, he went #2 3 times throughout the day, fell asleep by 11am, which he NEVER does, took a 3 1/2 hour nap, and ran a fever until 3:30am the next morning.

    Is that a reaction and could it have come on with only one day of having been mostly gluten free or do you think it was just a random bug of some sort. He's completely fine this morning. :huh:

    Oh another maybe random thing is that he craves milk like crazy. He woke up at 3:30am because he had to go to the bathroom, but was begging for some milk and asked for some more as soon as he woke up. This is something that happens a fair amount, so he either just really like milk or his body is telling him he needs it for some reason...

  15. Thx for the input Ravenwood. We have an appt. next Thurs. Now I'm leaning the other way and just want to get them gluten free as soon as possible. I recently weighed the 10 mth old and he's not even on the growth chart anymore :-( The weird thing though is that I stopped giving him gluten about 2 months ago....

    On a side note, do you know if when people say that 30% of the population carry the celiac genes and don't ever develop the disease if that number is referring to all the diff. "celiac" genes that they know of or is that 30% referring to the DQ2.5 gene specifically?? Just curious.

  16. I hope this helps. I'm 25 and my blood work was negative as well, but my biopsy was positive. I would not rely solely on the blood work. Blood work is never 100% accurate. Also, an endoscopy is a very painless procedure and insurance may cover it versus genetic testing.

    You're right that our insurance will cover it over genetic testing. Just out of curiosity, did your doctor recommend the biopsy based on symptoms since the bloodwork was negative or is that something you had to push for? Did you have the genetics done as well or no? Thanks for your input. It does seem like there are a lot of people out there with negative bloodwork and yet positive biopsies. Interesting...

  17. T.H. -

    Thank very much for sharing your thoughts and experience with me!! I am leaning toward just going gluten free and watching to see if their main symptoms improve. It's really hard as a mom to continue feeding them food that I suspect is "poisoning" them just for the sake of a test that is largely unreliable anyway! However I do see some positives in being officially diagnosed as well. One of my thoughts is that they could always do a gluten challenge when they're older if they need an official diagnosis, right? I think my husband leans toward an official diagnosis, but is open to just trying the diet, so I will share your thoughts with him as well. IMO, the sooner I can get them well the better. On a side note, my 10 month old weighs 17.8 pounds and we just found out that one of my friend's 3 month old weighs 15 lbs., so we think something has to be going on. However, I haven't given him gluten containing foods for about 4-6 weeks now, so I expected him to start gaining. Do you know if that is an unrealistic expectation?

    Also, with the genetics testing - do you know if when they say that 25-30% of people carry the genes for celiac, is that percentage including all of the gluten related genes or does 25 -30% of the population carry the DQ2.5 gene specifically? Just wondering if carrying the DQ2.5 makes my symptoms more likely to be coming from celiac disease as opposed to gluten sensitivity...

  18. Don't know their ages, but blood tests are notoriously unreliable for young kids (I think it was up until age 5 or so...). The other issues is if you don't eat wheat and keep them on a similar diet, they may not be eating enough gluten for the either of tests to come back positive. Does your insurance cover the genetics? Will their docs diagnose based on an improvement based on diet?

    The diagnosis is probably useful at times-- dealing with colleges, schools, relatives, etc-- if you have the time and money. I'd definitely eliminate gluten at home (for your own safety, too), but the harder question is what to do outside the house. I don't have kids, so it's not an issue. See parenting forum?

    Sb2178 - Thank you for your response. Their ages are 5,3 and and 10 months. Yes, the reason I question the negative bloodwork is that the year prior to this most recent test, the now 3 year old was 1 or 2 points away from testing pos., so it doesn't really seem consistent. At this point they do still eat a decent amount of gluten, but we will soon be making our home much more gluten-free as a result of my results and symptoms. Unfortunately our insurance doesn't cover genetic testing, so we will test each of the kids as we are able to afford it if we feel it is necessary. I do think our doc. would diagnose based on improvement, but I will ask that when we go see him next month to discuss everything. Yes - a big decision is what do we do outside of the home, but maybe their dietary response will determine that for us.... so much to decide... thank you for your input regarding long term issues like college, etc.!!!

  19. Sooooo, I feel like I'm in the middle of no-man's land with trying to figure out if we do in fact have celiac or not. The gist of it is in the fall of '08 I was diagnosed with hypothyroid and then shortly after that with a wheat allergy. I had/have suspected celiac all along because of chronic symptoms such as anemia, joint pain, extreme fatigue, chronic constipation, random headaches, gas, bloating, stomach cramps, etc.

    On top of all of my symptoms I have 3 boys who are between the 3rd and 5th percentiles for growth and who before solid foods were introduced were up in the 75th range. They oldest two (3 and 5) complain of frequent tummy aches, have very loose stools, the 5 year old has eczema, and the 3 year old has face flushing pretty much all the time and little raised bumps on his upper arms. Then at the now 3 year old's 2 year check up his bloodwork for celiac came up "inconclusive." If I remember correctly he was 1 or 2 points away from being a positive. After that we went to a GI who looked at both boys, did some stool tests to check for parasites, said they were fine and sent us on our merry way.

    Since I still strongly suspect celiac being that they are both very small and my infant just recently went from the 75th to the 10th percentile in a 5 month period of time, I went ahead and did genetic testing for myself. The genetic test came back positive for DQ2.5 hetrozygous. I don't want to go back on gluten to have a biopsy because I'll feel awful and my asthma attacks will come back due to the allergy, but I feel like I'm in this land of thinking I have it, but not totally certain. I wouldn't be eating gluten either way, but I want to know what's going on for the sake of my kids and I just kind of wish I could get a definitive answer one way or another.

    I'm leaning toward having the 3 year old biopsied despite his most recent bloodwork being negative, but I don't know. Ugh....

    Thanks for listening :-)

    Any thoughts or opinions are most certainly welcome!

  20. My eye shadow (Revlon Cream to Powder Eye Shadow) makes my eyelids red and burn every time I've used it. I've just been looking to see if it contains wheat and tocopheryl acetate is the best that I can come up with. Has anyone already contacted Revlon to know if their use of T.A is derived from wheat? If not, I guess I'll be contacting them. I can't use it either way because I'm reacting to it, but I'm curious to know if it's because of wheat/gluten.

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