Search Results for 'celiac'

[Anonymous]

Christine,

We don’t think Ben has celiac, however the ped has only done the blood test which I understand isn’t 100% accurate. As well, he had been off of gluten for about 3 weeks at the time of the test, so I’m not sure if that would have affected the results, our ped didn’t seem to think so.

We have discovered that he does better without gluten. He is deficient in an enzyme critical for the breakdown of gluten, casein and soy (DPP4) and also has what is sometimes called “leaky gut syndrome” where his GI tract is more permeable than it should be, allowing undigested foods, toxins, etc. to enter his bloodstream when it shouldn’t. This seems to have really messed up his immune system, as it is now attacking everyday foods thinking they are “foreign invaders”.

[Anonymous]

Christine,

you can’t prevent him from getting to totally, but you can make it so that he doesn’t have to take medication and can be considered a diet controlled diabetic. There are many people who just by altering diet and exercising can keep from having to be on medication. So just make sure he eats as good as possible (I know with all of your celiac problems fiber is difficult) and make sure he exercises at least 30 min 3 days/wk (can be split into 3 10 min sessions each day if needed 2nd to time restraints) and then he should be on the right track.

Sheri,

I don’t do much added sugar (I don’t bake much) and I don’t drink coffee or tea, just water/milk occasional juice, but if I am going to use a sugar sub.. I use splenda which is considered an artificial sweetener but is “made” from sugar so I don’t feel so bad.

I am in SC visiting family so I don’t know how much I will be on until mid week, but let me know if you have any other questions.

[Anonymous]

i sometimes add quinoa to rice when i cook it and i also add it to soup sometimes. we also used a quinoa pasta once and it was pretty good. we really like tinkyada brown rice pasta, but i could only get it out of town.

a couple of days ago i went into a store we don’t frequent alot, and my daughter pointed out tinkyada pasta to me and i just about cried in the store. they had quite a large selection of GF products that they have been getting in in the last month. i guess another lady in our little town had talked to one of the owners and got him to start ordering the GF foods.

does benjamin have celiac, or have you just learned that he does better off of gluten?

kevieb2008-03-14 20:01:29

[Anonymous]

it’s actually kevin that had his glucose levels flagged when he had blood work done recently—-i wanted him to have his cholesterol checked—which runs borderline high. i wasn’t expecting the glucose to be flagged. i do the opposite—-i seem to have reactive hypoglycemia. i have a brother with type I diabetes—which is back-to-back on the celiac gene, but he won’t test for celiac. kevin’s mother is a a type II diabetic and he has another aunt with diabetes—-but i don’t know which type.

kevin is not a whole lot over the cut off to be considered prediabetes—so i am hoping that with a few changes, we can keep it from progressing any further. type II diabetes and high cholestol aren’t a good combo for heart disease. there seem to have been alot of young people we know having heart attacks at young ages—-younger than kevin.

kevieb2008-03-12 11:01:11

[Anonymous]

I hope this doesn’t sound harsh, but I’d get a new GI. I know someone in New York who used to post on this site, and her ds had a feeding aversion as well. She knows the system really well, so I’ll ask her to come and post a reply to you. But I still think that you should get a new GI. Just based on the script you’re telling me about the prevacid, I’d guess that it might not work well. Not to be a pessimist, but it’s really hard to make these compounds correctly. Check out the thread stickied in the meds forum about pharmacy compounded PPIs. Make sure that there’s no flavouring added whatsoever and that you don’t get a dose larger than a 2 week supply, among the other directions in that thread. How many mg/ml is it? It sounds like a very low dose. I’d guess that if you have to fight that hard to get him on a PPI, then your GI is probably not the right person. It’s really hard going through a feeding aversion, and you need your GI on board. If he has a milk protein allergy, then you should try neocate over alimentum. We had the same issue with my daughter and her feeding aversion. They told us that they didn’t even know if she actually had reflux and that it was behavioural. They said that she was on a high enough dose of PPI. Meanwhile, she had so much reflux pain that she had terrible Sandifer’s and she wouldn’t eat anything awake. I went through a lot of docs. Did your son ever have a modified barium swallow to ensure that he’s not aspirating?… I’m just wondering based on your comment about the problems with suck swallow breathe. Also, has he ever had an endoscopy done? That can look for damage and also allergic esophagitis and celiac, among other things. I do know that there are several feeding clinics in New York, but don’t know where, as I don’t know my US geography. Good luck. It’s really hard to go through this. One more thing I wanted to tell you is that we had so many docs saying that my daughter’s problems were entirely behavioural and it used to make me really mad. Of course there’s a behavioural component, but it starts from pain and the reflux really needs to be well controlled so that they can develop positive associations with food. Eventually we got a really good feeding therapist and she told me that almost all of her clients with feeding aversions also have reflux, and that’s not a coincidence. So the docs might say it’s behavioural, but it’s not a coincidence that he has reflux.

[Anonymous]

leif finally called about his celiac gene results, and he is the only one of my kids that does NOT carry the gene. i’m sure that made his day just a little bit. we first learned about celiac disease because years ago, when he was very emotionally upset, he had thrown up and had the runs for a year—pretty ironic that he is the only one that can’t get it. (there is an extremely small % that are biopsy proven without either gene)

AND……..kevin is starting a new job in a totally different field than where he has spent the last 30+ years of his life. i’m not into astrology or anything, but if i was, i would say that the stars were lined up just right for him when this opportunity came up.

a friend from the ward (LDS church divisions) that we used to attend started to ask kevin about tires, when kevin told him he had lost his job. he told kevin that he might have an opportunity for him—but it might not necessarily be the job for him. we decided to hear it out and we are very impressed with what we have heard. it is in an area that i NEVER would have dreamed for kevin to go into—-financial planning and insurance sales—and this man was in the process of trying to find someone in this area when he and kevin started to talk. they will do all his training and we get payed during his training. he will be subsidized financially by the company until we can build up enough clientel to be strictly commission. kevin has been in sales for years and years with tires. he has had a strong base of customers that really like him. in fact, he had a sales and service route that followed him TWICE when he changed tire companies that he worked for—-this route covered most of one of our rural communities in the area. i guess what i am trying to say is that kevin knows a lot of people in the area that really like him, so he has a lot of names to start with.

i have to admit that i was just a little apprehensive about him doing this, after all, tires and financial stuff are different ball games, but the man that approached him seems to feel like kevin could really do a good job, and kevin’s dad, who usually doesn’t say much, told kevin that he thought this was a really good opportunity.

the company had kevin take an assessment test to see how well he might possibly do in the business and also a test to see how well he might possbly do when it came to testing for his insurance licence. he scored HIGH on the test that showed his likelyhood of doing well and he scored 91% on the test that showed how well he might do with his licence testing—and we were making jokes about being dumber than a post because there were only 3 math questions (story problems) and i think he probably got all of them wrong.

there is so much more potential for us in this business—socially, financially, with family time and with community service. it is different than any other financial company i have ever heard of. plus, they have alot of perks if you can meet certain goals—monthly, quarterly and yearly. sounds like a fun challenge.

we have just decided that we are going to jump in to this and be one of the best at it—i think that is the only way to look at it.

kevin will start training on the first of march—i think he does some locally, then some in a town several hours away, and then he flies to the home office for a little more intense training—-i think it is in rock island, illinois.

the company has been in business for over 100 years, and our own insurance man (with a different company) tells us that the company kevin is joining has a good reputation—-and get this—they start their meetings with a prayer and the pledge of allegiance.

kevieb2008-02-21 15:33:27

[Anonymous]

yes, we both have the DQ2 gene, but none of us has the DQ8 gene. it is not as common as the DQ2.

i don’t think that leif wants to know what his test results are.

[hellbennt]

so you & kevin both have the DQ2 gene?

does anyone have any ‘other’ gene (you mentioned DQ8)

[Anonymous]

celiac disease IS very common. they refer to it as the common disease that no one has heard of. they say it is about 1 in 133 that have it. about 30-40% of the population has one of the genes for it, they just don’t know what activates the disease in some people and not in others.

to be tested for celiac you need to have a total IgA serum test and a Ttg IgA test done. a Ttg test is the most accurate test, but you need to make sure that you are not IgA deficient, or the test is worthless. i know that some people refer to a celiac panel, which has about 5 different tests that are run—-but part of them are the old tests that are not that accurate. also, celiac testing is not always accurate in really young children. they don’t always start producing Ttg antibodies until they are a little older. obviously the really sick ones were discovered in some way, though, because they used to think it was a childhood disease that people outgrew. now they know that you never outgrow it, but sometimes people go through a honeymoon period through the teen years where the sumptoms disappear—-but damage is still being done. kassie and tianna had totally different symptoms, and molly had no obvious symptoms—although my sister used to tell me that molly looked like an ethiopian child………

kevieb2008-02-08 18:12:55

[Anonymous]

there was a discussion about rice dream on the celiac board. rice dream has so many ppms of gluten in it, but it is what is considered in the acceptable range to be called gluten free. it is also possible that they changed their recipe.

i just bought some benefiber and the ingredient in it is wheat dextrin—-and right below that it says GLUTEN FREE—–now, there is a contradiction in terms!!LOL!!!

wheat starch is a controversial item, also. in the US, it is not considered safe for a celiac, but in some other country (?) they consider it safe for a gluten free diet. i wonder if the people that consume it have their blood tested on a regular basis to see if they are actually keeping themselves gluten free?

there are a lot of things that say “processed on equipment that also processes wheat, or in a facility that processes wheat. we, personally, go ahead and buy these products, and so far we have not had a problem—-although the twins numbers are higher than they ought to be—but they may cheat a little on their diet. molly is really good about her diet.

kevieb2008-02-08 18:02:39

[Anonymous]

thats very interesting!! maybe many people do carry it!! maybe its VERY common and we have no idea!!??

how do you test for it?? we NEED to do that!

[Anonymous]

daisy called today to get her genetic results. she also carries the DQ2 celiac gene. so far, that is 8 out of my 9 kids that carry the gene. leif has not called for his results, yet. shouldn’t the odds have been a little better for us than this? daisy has a different biological father, but out of the seven kids that kevin and i have had together, every single one carries the gene. since kevin and i only carry one gene each, wouldn’t it have been more likely that only some of the kids would carry it rather than all of them?

[Anonymous]

That’s really interesting. Hopefully you won’t have ANY grandchildren with celiac, despite the odds.

[Anonymous]

at least one of each of our parents has to carry it since we both carry it, but as far as we know, no one in either of our families has been diagnosed with celiac. my brother is type 1 diabetic and diabetes type 1 is back to back on the same gene as celiac.

[Anonymous]

I didn’t realize that so many people carry the genes. Do either of your parents or siblings have it?