Celiac Gene Found

[Guest maddiesmom]

Hello.. I am new to this site.. we just found out two weeks ago that my 6 year old daughter has the celiac gene. She has went thru numerous testing.. the last was a colonoscopy & upper gi scope... they took some biopsies. that's how we knew because it didn't show up in the blood work.. she also tested positive for Chron's (30% chance it will show up at some point). Her doctor doesn't want me to change her diet just yet.. she put her on some gluten free supplements and we have a check up next month. I am going to go ahead and start omitting some of the foods she eats regularly that contains gluten.. I figure it can only help. Just reading thru a few of the postings I few alot better.. at first I looked at this as the worst thing that could happen.. she loves bread.. mac & cheese and cereal are her favorites. I have found thru research on the web and reading The Gluten Free Bible that it's not a "death sentence" from real food.. I am glad we know now what has been causing her stomach pain for going on 2 years now and I am ready for her to start feeling better and getting thru one day without having to hear her say that her belly is hurting and that she doesn't know why her belly has to hurt her all the time. I know it will be challenging ( I am not the best cook) and hard at times because we go out to eat alot but in the end it will only help her be healthier and us too because we will eat what she eats.

Any advice would be appreciated! Thanks!

[gdobson]

Hi! My son was dx 2 years ago. I had an advantage for him since I had been dx 5 years ago. And anything out there that your daughter really likes, I can guarantee we can come up with some sort of substitute. Baking methods and products have come a long long way in the last 5 years. My first piece of gluten-free bread felt like a dry sponge in my mouth. Now my entire family eats gluten-free and we all like it. If you are looking for something specifically, just post it, and I'll bet you somebody can come up with a recipe or a place to buy something just as good (without the stomachache!)

[Ursa Major]

Hi, and welcome to this board. Your doctor appears to be fairly ignorant about celiac disease. You daughter has the celiac disease gene, she has the symptoms, why would she not want her to be on the gluten-free diet? Most Crohn's patients are helped by the gluten-free diet as well. So, you can't go wrong in putting her on a 100% gluten-free diet.

I think that half-hearted measures won't be helpful. Don't just replace SOME, but ALL of her gluten foods with gluten-free ones if you want your daughter to get well. Don't worry about what the doctor says. Your doctor is very inconsistent and illogical, anyway. Why bother giving her gluten-free vitamins, if she still eats gluten?

Please go all the way, put your daughter on the gluten-free diet AND the gluten-free vitamins. Also, make sure that she doesn't play with regular play-doh, as it contains gluten, and buy her a new toaster if she will be eating gluten-free bread, because you can't get the old one clean enough to be safe.

In addition it would be wise to eliminate all dairy from your daughter's diet as well, at least for the first six months on the gluten-free diet.

I hope your little girl will start feeling better soon.

[gfp]

Hey welcome

I honestly don't think cutting down will help at all. If she has celiac disease she has celiac disease... and unless you are gluten-free your body still produces antibodies... at 6 she's a bit marginal for the tests to be accurate... and also it depends which blood tests etc.

The only advantage I can see to starting to restrict her diet without going all the way is if she does test positive later its going to be a lot easier than changing her routine when she's 8-9 ....

Of course we know so little about celiac disease that I could be completely wrong its just what we do know says its all or nothing but that doesn't mean they won't discover different things later...

[Nic]

I will add to this that the younger you make the switch from gluten to gluten free the easier the transition. My son was 4 when diagnosed and has been gluten free ever since. He has adapted very well and even though he had to give up most of his favorites, he made new favorites very quickly.

Nicole

[Guest maddiesmom]

Thanks for all your advice/input. It does make since just to go all the way instead of just half.

[Juliet]

As for eliminating the gluten items she loves, there are alternatives to most of those things. Both Annie's and DeBole's make a gluten free macaroni & cheese (DeBole's calls it white cheddar & shells - my son likes that one the best with a little added parmesan), and there are several gluten free cereals - EnviroKidz Gorilla Munch, Koala Crisp (like cocoa krispies w/o the gluten), Panda Puffs, Amazon Flakes, and at many regular grocery stores currently Dora Stars, Mickey Mouse Clubhouse Cereal, Little Einsteins Cereal, Fruity Pebbles, Cocoa Pebbles, and Trix are all gluten free, too. At places like Whole Foods you can get the Crisped Rice cereal which is very similar to Rice Krispies w/o the gluten, and there are several varieties of corn flakes that are also gluten free. And instead of Cream of Wheat you can get Cream of Rice. Bread's a little more difficult - the best thing is to make your own, in my opinion. I invested in a breadmaker and am very happy with the purchase. And I like Gluten Free Pantry Favorite Sandwich Bread Mix for an easy way to make a loaf of bread (you can get it online very easily). We also sometimes use Corn Thins (similar to rice crackers but thinner and taste like popcorn crackers) and turn them into sandwiches, and you can also use gluten free waffles, too.

And as everyone mentioned, if your daughter actually has Celiac Disease, and if you already have a diagnosis, you want to go gluten free right away since everyday she's exposed to gluten she's being damaged and therefore at increased risk of other autoimmune diseases and other health problems. If your daughter only has the gene, she may or may not have the disease; 30-40% of the population have at least one of the genes and only 1% of the population have the disease. Could your doctor therefore be waiting for the results of the biopsy before giving you an actual, final diagnosis? This would make more sense why she/he is making you wait before going on the diet since there is no reason to wait otherwise. The full panel blood screening and biopsies of the small intestines are not as accurate when someone is off of gluten.

And the suggestion to go dairy free for awhile is valid since the enzyme that breaks up lactose is the first to go when the disease sets in, but we found that hard to follow when our son was first diagnosed. It was enough of an adjustment to not have all our meals revolve around gluten like it was (but now I can't believe our meals were ever that consistently centered around gluten as I am reminded every time I'm around others and eating), and our son was being very picky. Our pediatric g.i. suggested we use Lactaid tablets every time we gave him dairy, and it helped tremendously. He didn't have any problems eating cheese, ice cream, pudding, or milk. And we found with him that within a month he didn't need them anymore.

It's tough at first, the biggest issue initially being changing how you think about food and plan your menus. This one actually will be easier to adjust to than you might think. The next step is dealing with cross contamination; that's more of a stickler. But seeing your kid happy and healthy after not being that way for a longer time than you ever wanted to deal with makes it worthwhile. And everyone here, no matter how it may sound sometimes, is here to help and support one another. Good luck, and ask as many questions and read as much as you need - I've learned more things here than I did from any of the doctors we've visited!

[chrissy]

just wondering why your doc wants you to leave her on gluten? does she want to do a biopsy to confirm celiac? alot of people with the gene don't have the disease--but with your daughters symptoms...........

[gfp]

And the suggestion to go dairy free for awhile is valid since the enzyme that breaks up lactose is the first to go when the disease sets in, but we found that hard to follow when our son was first diagnosed. It was enough of an adjustment to not have all our meals revolve around gluten like it was (but now I can't believe our meals were ever that consistently centered around gluten as I am reminded every time I'm around others and eating), and our son was being very picky. Our pediatric g.i. suggested we use Lactaid tablets every time we gave him dairy, and it helped tremendously. He didn't have any problems eating cheese, ice cream, pudding, or milk. And we found with him that within a month he didn't need them anymore.

Yeah the only thing about dairy is whether its casein or lactose....

At 6 she is somewhere on the border between tolerating milk and not....

Indeed you made me think of something compleltely new.... and me being glutened at the moment that's no mean feat...

It makes me wonder if the onset of celiac disease in 5-10 year olds might be partly caused by interference as their lactase naturally decreases... like the celiac disease was there but the lactose intolerance wasn't and its the lactose intolerance actually tips the balance vy just overloading the poor gut?

[johnsoniu]

Another suggestion for mac and cheese is to use Tinkyada shells and use the cheese mixture from the Kraft mac'n'cheese box( that part is gluten free). It may seem like a waste to throw away the Kraft macaroni, but if you buy them in bulk they're pretty inexpensive. Someone said Kraft also sells their cheese mixture individually, but I have not been able to find any any that wasn't cost comparable to just buying the whole box.

[Amooliakin]

My daughter loves the Annies gluten-free Mac and Cheese. And since I make it for her and the regular kraft orange stuff for my son I can throw in a bit of the kraft cheese on top of hers to make it extra cheesy. I like it too.

I agree with everyone about not going half way... or even 97% of the way, as we seem to be doing. We try to be 100% but it seems that every week there is a chance to mess up somehow, even if it is in a tiny way. And then my daughter suffers and we all suffer.

We have our 6 month followup today and I'm curious to see how my daughter's blood test will look compared to the first one.

And I'm also curious to see if she has the gene... although since she has celiac she has to also have the gene. I'd like to know which one though, since there are at least 2 that can cause celiac.

Good luck....

[Juliet]

It's something like 99% of the people who have Celiac Disease have one of two genes: HLA-DQ2 (about 92% of the 99%) and HLA-DQ8 (about 8% of the 99%). There is then another 1% or so that has neither of those genes. So, although your daughter has Celiac Disease and most likely has one or two of the genes as well, there's still a very small chance she doesn't.

[Amooliakin]

The reason I am particularly interested in the genes is that after my daughter was diagnosed I got a blood test to see if I am a "carrier" and I had ONE HALF of the DQ2 gene, which would indicate to me that the father provided the other half.

Only in our case there is no biological father around because we used an unknown sperm donor (hope this is not TMI). So I am wondering if she got two halves of DQ2 one from each side.... or got a full DQ8 or DQ2 from the donor.

I do realize however that where it came from is not the point. But I'm just more curious, and especially so since I want to find out my son's chances of getting celiac. His blood test came out negative for the antibodies, but they did not run the gene test on his blood (even though we had requested it).

[Cruiser Bob]

Lots of good information here. Based on my household (3 generations gluten-free), it's gluten-free 100%, period. Next, slight cheating "won't kill you" -WRONG. Damage is damage at a certain point there will be enough damage to cause all sorts of other things. On the Chron's - gluten-free diet helps, and also I have a friend with a 22 YO Chron's child - it was no fun rushing to the hospital 4 hours away when he screws up his diet too much. Thus, my real point: as parents with children, in their youth we are setting up their life patterns. We can't control what the eat/drink when they are on their own - the kids themselves have to make their own choices.

Based on what I've gone through the past 7 years, and what my dad went through 15 years ago, I'd highly recommend a gluten-free household - it's easy once you set your mids to doing it.

Also, for your daughter - look into Camp Sealth through Gluten Intollerance Group (Gig). The gluten-free sessions are in late July early August I believe. The camp is a wonderful experience for the kids. They are intermixed with the regular campers, but eat out of a separate kitchen. The gluten-free and other allergy kids get to eat the same basic camp food (pizza, spaghetti, bread, french toast, cake, cupcakes, more bread, garlic bread, etc.). Only the gluten-free food is better - it's a lot of fun watching the kids come back for 3rds, 4ths, 5ths and then sharing with their non-gluten-free friends and coming back for more. I've volunteer-cooked for two years - great experience. Plus the gluten-free kitchen is run by Cynthia Kuper - the head of GIG, and the meals are/can be custom prepared for kids with other allergy issues (peanut, dairy, diabetes) A chron's diet should not be a problem for camp. Bob

[Guest maddiesmom]

I have put a call in to her doctor/nurse to see why she didn't tell me to go ahed with the g.f. diet and to see if she is planning on doing more testing or bloodwork next month if so I don't won't to screw up the results. I also forgot to mention that she had a barium x ray test done last Friday.. the tech said everything looked normal but they can't "legally" tell you anything so we will get those results back at the check up. I will let you guys know what the doctor says. Thanks so much for all your advice.. I have really learned alot on here so far! All of you will be in my prayers too.

Thanks