Another Ttg, Not Looking Forward To Results :(

[kaiess]

Last year this time my son was first screened for Celiac. He has Type 1 diabetes and his ped endo screens all the type 1 kids. His TTG came back at 95. Normal was under 20 I believe (or lower). They scoped him 3 months later and it was negative but they did find ulcers (not H.Pylori related). We treated the ulcers with lansoprazole 60mg daily for 6 weeks. We then retested the TTG which would have been 6 months following the first TTG. It was now up to 145

He has been growing well, eating well, no stomach issues. I do notice him taking 20 minutes in the washroom usually twice daily for bowel movements. He has always been like this though. I also notice (gross, sorry) him passing lots of gas when having bowel movements, which is really the only odd thing I can think of when it comes to bowel movements. I admit I don't go inspecting so I really don't know if he's having diarrhea or what.....just seems really "airy" LOL!

Anyways, we've repeated the TTG just the other day and they said if he's over 200, everyone who has reached that has Celiac.

This poor kid (and his parents) has enough to deal with, with him having Type 1 diabetes. I'm cannot cook for the life of me and am working over 50 hrs a week. I cannot imagine having to make virtually all his food (in fact I hate cooking). He is also extremely picky and LOVES pasta, breads, etc.

Please pray for us that his TTG has gone down. This will be a HUGE change for our family if he has Celiac....not to mention a huge added cost. We are a family on the go and we also live in a fairly remote city. We have 3 big grocery stores (Safeway being one of them) but they carry very few gluten-free items.

Guess I'm just petrified of a possible diagnosis I don't know how we will cope. How do you travel, where do you eat when no one knows what Celiac is? For us to go anywhere it is usually a 2-3 day drive there and back.

Oh and he's also had the genetic testing done and has both the genes.

Kathy, mom to Jakob, 9, type 1 diabetes since age 4.

[ravenwoodglass]

I will be very surprised if his TTg has gone down if you are still feeding him gluten.

It is a big change when you start the diet, but it is not the absolute end of the world. There are a lot of great folks here that are ready to help in any way they can.

I also was really not someone who wanted to spend a lot of time in the kitchen. For me a rice cooker and my crock pot were vital to making life easier. I also make sure when I do cook I cook for multiple meals. For example, the big roast I cook on Sunday turns into barbequed beef on Monday, some more of it gets tossed in a pie plate with a bunch of veggies and a bit of gluten free gravy and covered with instant potatoes to make a shepards pie on Tuesday, and then anything left gets thrown into a gluten-free beef stock with veggies for soup later in the week. I do the same sort of thing with chicken and also mass cook ground beef and package for later use in spagetti sauce or for adding to a veggie stir fry or into rice. There are many meals that can be fixed quickly and tossed in the oven and I soon realized that it took just as much time to get in my car and run to the fast food place as it did to toss a chicken and potato in the oven. The added benny for me is that I can sit and read the paper while things cook or tidy up a bit. Be sure to check out the recipe section here and if you need to post a topic asking for others quick kitchen hints. There are also more and more gluten free convience type foods available. I will be having a Hormel AuJus roast tonight with some instant mashed taters and a salad as it has been a busy day.

If you live in an area with a Wegmans they label all their gluten-free stuff which makes shopping so much easier. Please vent if you need to, ask any questions you need to and most importantly your doctor was right about this, Anyways, we've repeated the TTG just the other day and they said if he's over 200, everyone who has reached that has Celiac. IMHO even if he hasn't quite reached that 200 mark he should still be on the diet. IMHO he should have been on the diet after the test came back at 95.

One bright note, many diabetics on the gluten free diet have an easier time controlling the BS levels, hopefully that will be the case for him.

If there is anything we can do to help do not hesitate to ask.

[home-based-mom]

Yes to what ravenwoodglass said.

Actually Safeway carries many gluten free items but you will not find many of them in the center aisles where the processed foods are. You will find them around the perimeter in the fresh and frozen meats and produce sections.

You don't have to be a good cook to fix a quick and easy meal. Your crock pot might become your new best friend! Open Original Shared Link is a blog of a different crock pot recipe every day for a year. I believe most are gluten free.

WalMart frozen chicken pieces, Minute Rice, and a bag of frozen veggies does not take any time or culinary skill. Trust me on this one!

Gluten-free substitutes are often very pricey. People on tight budgets learn to eat differently. I have read posts where people feed their entire families gluten free for less than $100 per week. Some are one-income parents, some home-school multiple kids. None have time to cook. See above crock pot comment.

Oh and he's also had the genetic testing done and has both the genes.

He got one from each of his parents - have you been tested? It would make your life *SO* much simpler if your whole household were gluten free.

[kaiess]

Thank you both for your replies. I'm here on this board preparing myself for the diagnosis. They will not give us an official diagnosis (BC Children's Hospital) until they see a positive biopsy. I have asked for the bloodwork on my daughter for now. They ordered the gentic test as well as an IgA, TG, and what looks like a 1g1a or a lgla?? She is only 5 and is petrified of needles even if she has EMLA cream on, so I've been holding off on her for now. The only symptom she has is irritability (but then again she's a girl LOL and 2nd child LOL). I myself have no bowel issues but my hubby on the other hand has IBS-type issues at times. When he's gotta go, he's gotta go!

Thanks for the crock-pot ideas. I truly am the worst cook ever. I can make scrambled eggs, KD, spaghetti, chili, shake and bake chicken, protein shakes, soup from a can LOL! I have never had an interest in cooking b/c I don't really have an interest in food. I grew up with my dad who couldn't cook either and thankfully I met my husband who is much better than me but still hates cooking. We don't eat out much but rely more on the frozen, ready to go pasta dishes in a bag, spaghetti, healthy cereals, sandwiches, sometimes we just eat fruits and veggies for supper. None of us are big eaters so when we make meals most of it ends up as waste.

I can see spending my only day off each week cooking meals for the rest of the week and freezing them.............but I will do what I have to do to keep my son eating gluten free.....including teaching him to cook also (then maybe he'll eat it too!)

Again, thanks for the replies, thanks for listening to my pitty party. I will enjoy our next few weeks of food freedom.

Kathy, in northern BC, Canada

[ravenwoodglass]

Thank you both for your replies. I'm here on this board preparing myself for the diagnosis. They will not give us an official diagnosis (BC Children's Hospital) until they see a positive biopsy. I have asked for the bloodwork on my daughter for now. They ordered the gentic test as well as an IgA, TG, and what looks like a 1g1a or a lgla?? She is only 5 and is petrified of needles even if she has EMLA cream on, so I've been holding off on her for now. The only symptom she has is irritability (but then again she's a girl LOL and 2nd child LOL). I myself have no bowel issues but my hubby on the other hand has IBS-type issues at times. When he's gotta go, he's gotta go!

Thanks for the crock-pot ideas. I truly am the worst cook ever. I can make scrambled eggs, KD, spaghetti, chili, shake and bake chicken, protein shakes, soup from a can LOL! I have never had an interest in cooking b/c I don't really have an interest in food. I grew up with my dad who couldn't cook either and thankfully I met my husband who is much better than me but still hates cooking. We don't eat out much but rely more on the frozen, ready to go pasta dishes in a bag, spaghetti, healthy cereals, sandwiches, sometimes we just eat fruits and veggies for supper. None of us are big eaters so when we make meals most of it ends up as waste.

I can see spending my only day off each week cooking meals for the rest of the week and freezing them.............but I will do what I have to do to keep my son eating gluten free.....including teaching him to cook also (then maybe he'll eat it too!)

Again, thanks for the replies, thanks for listening to my pitty party. I will enjoy our next few weeks of food freedom.

Kathy, in northern BC, Canada

You all should be tested. Even if you don't think you are having symptoms. You may want to google silent celiac it might be quite eyeopening, although most find they are having symptoms that they just don't associate with it becasue celiac is thought of as mostly a gut disease. It is not. It also impacts the brain and virtually all other organs. I do hope with his blood results that even if the scope is not postive that you get him gluten free as soon as the testing is done.

[Fiddle-Faddle]

You can already cook everything you need to--you just need to substitute a few ingredients, that's all!

Really.

You can use rice pasta instead of whatever you were using. Tinkyada brand is available at most grocery stores (usually in the organic section), and has directions on the package. I have to use a bit more water in the pot than I used to with "normal" pasta, and I have to stir it a lot for the first few minutes to prevent it from sticking to itself.

Instead of Shake-and-bake, you can buy gluten-free corn flake crumbs and add some garlic powder or seasoned salt, or you can use corn meal. It bakes exactly the same way.

Your chili is probably already gluten-free.

Here (www.betterbatter.org) is a website where you can buy gluten-free flour (a blend of rice flour, corn starch, tapioca, xanthan gum, and gelatin) that you can use just like regular flour. On that website are REALLY good recipes for all kinds of things gluten-free,including bread you can make in your bread machine (if you don't have one, get one--they're marvelous).

There is also a flax bread recipe somewhere on this board (pm me if you can't find it and I'll send it to you)--it tastes very much like whole wheat bread. I make it in 4-inch round cake pans, a dozen at a time. Those 4-inch cake pans are made by Wilton, and they are the PERFECT size for burger buns or sandwiches. But you could also use a couple of 8 or 9-inch square pans, and cut them like you'd cut focaccia.

You can make pizza on corn tortillas instead of on pizza shells. For thick crust, make a sandwich out of two tortillas and a round piece of provolone. Brown (fry in a pan with a little oil until golden-brown) on both sides, top with sauce and more cheese, and stick it under the broiler for 1-2 minutes. Voila--pizza! And faster than delivery.

Soups from a can are undeniably easy. There are quite a few gluten-free canned soups, but you have to read labels. I'm not patient enough to read labels, so I make whatever soup with boxed chicken broth (read the label, again, as some brands do contain gluten, ugh), whatever vegetables I want (onions--you can use frozen shredded, or scallions are easy--, garlic, canned diced tomatoes, celery, carrots, shredded chicken (leftover shake-and-bake, or canned, or sliced deli meat), and cream if I want a "cream of" soup.

YOU CAN DO THIS. And it won't be nearly as hard as you fear. Really. I cried for two days when I got my diagnosis--and then I felt so relieved when I found out how many good-tasting options there are for EVERYTHING. The only thing I haven't made yet is gluten-free puff pastry--but there is a recipe for it on betterbatter.com! (But I never made puff pastry in my gluteny days, so I'm not gonna now!)

Many of us here LOVE to cook. Post whatever you want to eat, and several people will post a tried-and-true recipe for it faster than you can say "gluten is poison!"

[Fiddle-Faddle]

BTW, if your son has any additional issues like asthma or eczema--they are very likely directly related to gluten, and will likely resolve or improve on a gluten-free diet.

I'm not sure I should pray for a reduced TTG. It sounds awfully likely that your son already has celiac. If his TTG were to suddenly reduce, he might not get the treatment he needs--a gluten-free diet--and celiacs who keep eating gluten usually end up with horrible autoimmune diseases.

Please forgive me, but what I will pray for is that you find answers, good health for your son--and an easy fix to enable this.

[kaiess]

Update: We received the results the other day for my son and his TTG has gone up much higher again to +222.9 it said. I don't know if that's as high as the test reads and it means he could be much higher but it had the + sign in front of it. Normal is under 20. I spoke with the GI Clinic nurse and she said the doc wants to rescope him. I then asked her to be honest with me and I asked what his chances are that it will be negative. Her response was "um, no, he has it". I then asked if they have ever seen a negative scope with a TTG over 200, she said no. I am not going to fight the scope b/c I want to make sure his ulcers have healed from last year. He had no symptoms of that either. So we have until likely early June to wait for a scope, study, and learn to cook! I am going to work like crazy over the next 2 months to save up for our trip (2 days driving there and back for the scope) as well as for the extra $ it will cost for us to buy gluten free food/ingredients. We are having our daughter tested this week and I will request bloodwork for us too. The whole time we were waiting I would always say things to Jakob like "Well, if you have Celiac you'll be able to eat this and this but not this and this." So I've slowly been hinting the food restrictions on him but have yet to tell him he will never eat his beloved Pizza Hut buffet ever again or McDonalds or any of those places when we're on holidays. He himself has been asking about certain products and whether they'll be allowed so it won't be such a huge shock. I reminded him that Cadbury Cream Eggs were on the safe list that I came across.

If anyone has any tips on how to teach him that this will be lifelong and his life will drastically change in June, please feel free to respond.

I am just so glad I prepared myself for the worst. I haven't cried about it once and am thinking positively, just like when he was dx with Diabetes. Let's just get on with the plan, right!

Off to study some more......want to try to memorize all the forbidden ingredients by June.....and I'm going to try a recipe today and every few days (don't worry there is still TONS of gluten in his diet) so they get used to some different food gradually instead of a huge change all at once in June.

Kathy, mom to Jakob, 9, Type 1 diabetes since March 2004, now Celiac March 2009, also mom to princess Jadyn, 5 no dx yet but severe behavioral issues (at least at home anyways...hubby thinks it's normal, I don't and suspect Celiac...or hope it is so the issues go away!!)