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carecare

Having A Tough Time...

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My husband has gluten free for 2 wks now. His health is improving...but still having some setbacks with the D. However, he has not had one episode of indigestion since the start...which is something for sure as he's battled that for years. He's also has no fatigue which he always thought was just from not getting enough rest. But the D happened the day after Christmas and twice since...but not as bad as it's been for 3 months every 6 or 7 days he'd have 2 days of it. Now it's less and not as intense. Well, today he's very depressed. He's having a hard time with this whole thing. He knows he feels better but the D is causing him uncertainty about his gluten free diet. I also mentioned to him that maybe he needs to go milk free too for a while to let his body heal. We've also discussed the enterolabs testing and he's getting on board with that now...because then he will know for more certainty if this is what his life is going to be like. He is getting overwhelmed with fast food ads, regular food ads...and the thought that he has to change so much about his eating. I haven't seen him so depressed in a long long time. :( It's so hard to see him like this...and I hope it's just a transition that he has to go through. He feels he won't be able to eat away from home ever again, never eat in a restraunt ever again. We handled staying at his mom's for 2 days and he did just fine. What do others do about vacations? He has that on him mind too...how do you eat? We plan on doing Washington DC sometime this year with the kids and he is so worried about how he will be able to survive the eating portion of the trip? What do you all do?

Thanks for any advice in helping us through this tough time. I am trying so hard to make good meals and make things as normal as possible for him...it's a big change for me too...but I am willing to make all the changes necessary to get him healthy and happy again.

Carecare

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Guest j_mommy

It's totally normal to go through that!

The first little while is full of ups and downs and setbacks until you get the hang of the diet. But it sounds like overall he is feeling better! It is just overwhelming at first.

Vacations can be daughting. 1) know where you are going and research teh area...restaurants, grocery stores that carry gluten-free food ect(ask for help on here about certain places ect) 2)bring some snacks,simple food with to keep in teh motel room.

If it were me(I have a child as well)...I would want a firm diagnosis...just so I could know and keep an extra eye out for my kids as well. It's a personal choice.

It does get better...the road can be bumpy but eventually it will smooth out for you! Good Luck

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Even those who don't find the diet hard find the transition to be a challenge. It's such a huge change, in a place where you'd never think to make such a huge change. And it's so insidious, creeping into all kinds of things - like vacations! But you can adapt around all of those things, including vacations. It takes time to answers to all of those questions and figure out the best way for *you* (well, your husband :) ) to tackle each challenge, and you generally have to do them one at a time. But you'll both get there.

For all of us with the issue, though, and for his sake, thank you for being so supportive. :D

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Thanks. I needed some keep going vibes.

I have 4 kids and have 2 for sure that have possible signs of celiac. In fact my oldest had her appendix out 3 yrs ago and the dr. said the cells that surrounded her appendix were consistant with those who have Celiac disease. So he did a blood test and it was negative. However, my daughter had little gluten in her diet as she has never liked bread...and won't eat sandwiches and rarely eats cereal. So her diet at the time of testing was very low gluten so I wonder if that would have scued the testing. She has D quite often with bad cramping and bloating. The last time was a day after we ate pizza at a restraunt...and my dh always wondered if pizza was a trigger...along with pastas and beer. So it seems he was right on...as he's staying away from all that and feeling much better! Anyway, my other daughter 13 has lots of symptoms that could be related as well...but no D problems.

What's the concensus here? Is it wise to go back to a full gluten diet (for which you aren't looking forward to because of the way it makes you feel)...just for the blood test. Find a dr. that will do a biopsy even though you (meaning husband) hates drs and doesn't trust them one bit. Or is it just as wise to get the enterolabs full panel done and go from there?

Thanks for the advice. I'll make sure to do our research before we travel.

Carecare

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I expect that your daughter had a false negative on her blood test, due to not eating enough gluten. If the surgeon saw changes consistent with celiac disease when taking out her appendix, I suspect that a biopsy might have been positive.

The blood tests aren't that accurate, and many people have had negative results, while still having villi damage.

I don't recommend going back to eating gluten just for testing. If your husband is happy with trusting the improvements he is seeing from the diet, that should be enough. You might consider having your whole family tested through Enterolab (if you can afford that).

Why don't you make your house totally gluten-free, not just for your husband's sake, but to see how it makes everybody else feel?

Going out to restaurants during the first few weeks is not advisable, because if he gets glutened it stops him from healing. Plus, you don't know enough about living gluten-free yet to know what to watch out for.

But eventually it should be no problem, even though you shouldn't do it too often (once a month is definitely okay), because there is always a risk involved. But you do have to get out, so the risk is worth it.

Vacations can all be managed. We've stayed in places with little cottages with kitchen, and hotel rooms with a cooking corner, to cook my meals myself if necessary.

We went on a cruise two years ago, three months into the gluten-free diet, and a couple of days after figuring out my other intolerances. And with the help of the maitre d and the hostesses, managed just fine, with only one mistake.

It WILL get easier. And don't try to talk your husband out of having 'the blues' right now, he is entitled to a grieving period. There is no reason for concern yet, unless it goes on for months.

Be there, be encouraging, make him yummy food, but don't tell him that there is no reason to be depressed.

And unfortunately, eating/drinking dairy is likely the culprit in making him feel bad right now. He needs to eliminate dairy for at least three to six months before he can try to reintroduce it.

I understand why your hubby doesn't trust doctors. Neither do I. A couple of my kids will act like I am stupid for not trusting doctors. But they haven't been told for fifty years by ignorant doctors that their health problems were all psychological, either.

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Thanks again for the encouraging posts. If only I could get him to go dairy free as well. He's having so many doubts right now....saying maybe he'll just go back and feel bad physically but be able to feel good mentally because he can eat whatever he wants.

I really need to make this household gluten free. I'm just a bit overwhelmed myself. I think I need to order some books...cook books, pocket guides for grocery shopping and such. I need to be prepared a little more before ridding the whole house. Maybe by the end of the week and by the time I grocery shop next I'll be able to go full throttle gluten free. I know the kids will be whining...they already are. Especially my 15 yr old (who would benefit greatly going gluten-free). ...she's restricted already with what she can eat because of her pretty severe Oral Allergy syndrome. To restrict her diet even more...ack...I feel bad. However, I'm sure it would be the best thing for her...and my other kids. I would get all them tested if we had the money. :(...5 tests x $$$...not sure we could swing that right now. I'm hoping dh will decide it's worth the $ for his testing and then go from there with the kids.

Thanks to all. I'm glad to hear this can be a normal reaction ...his depression...his mourning. That's exactly what I feel it is for him...a mourning the loss. I'll be supportive..

Carecare

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Thanks again for the encouraging posts. If only I could get him to go dairy free as well. He's having so many doubts right now....saying maybe he'll just go back and feel bad physically but be able to feel good mentally because he can eat whatever he wants.

I really need to make this household gluten free. I'm just a bit overwhelmed myself. I think I need to order some books...cook books, pocket guides for grocery shopping and such. I need to be prepared a little more before ridding the whole house. Maybe by the end of the week and by the time I grocery shop next I'll be able to go full throttle gluten free. I know the kids will be whining...they already are. Especially my 15 yr old (who would benefit greatly going gluten-free). ...she's restricted already with what she can eat because of her pretty severe Oral Allergy syndrome. To restrict her diet even more...ack...I feel bad. However, I'm sure it would be the best thing for her...and my other kids. I would get all them tested if we had the money. :(...5 tests x $$$...not sure we could swing that right now. I'm hoping dh will decide it's worth the $ for his testing and then go from there with the kids.

Thanks to all. I'm glad to hear this can be a normal reaction ...his depression...his mourning. That's exactly what I feel it is for him...a mourning the loss. I'll be supportive..

Carecare

One thing you really need to let him know about is the withdrawl that a lot of us go through. It can cause depression and anxiety for a couple of weeks when we first stop injesting the toxin. This is normal. He needs to hang in there for at least another month. Also if your home is not yet gluten free it is hard to avoid CC at first, which can lead to lots of ups and downs also.

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Guest j_mommy

I went lactose free(all dairy products) for about a month after going gluten-free and then started adding back and I tolerated it fine after that.

As far as the testing goes....it's personal choice wether to use DR or entrolab. If you can afford entrolab and not go back on the gluten..may be worth it not to go through all that pain ect. For some dietary response is enough.

I will say though it makes life alot easier if the whole house is gluten-free....less issues with CC. And meal time is easier too.

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I almost always rent a hotel room, condo, cottage or cabin with a kitchen when I travel. If I am traveling by car I bring everything I need including utensils and pots and pans. I premake the main meals, freeze them and put them in a cooler. I also make sure I have lots of gluten free snacks. When we get to our destination we go to the grocery store and buy the rest such as eggs and milk.

When traveling by air I research where to buy gluten free food and resturants. When my diet was gluten free, soy free and fat free I actually froze made all my main meals and froze them in single servings. I put the meals into a soft sided beverage cooler and wrapped a blue ice mat around the food. The meals were still frozen even after 7 hours. Also, bring at least 1 1/2 meals with your carry on luggage. No liquids or gels. Examples are jello and yogurt. Milk, soda, and juice can be purchased past security, otherwise I assume that I will not be able to find food in the airport terminal.

You can troll the internet for receipes. This site and other sites have many gluten free receipes. I do not attempt to recreate gluten filled meals. My objective is to make gluten free meals that taste good.

It will all get easier with time. You and your family will implement coping strategies that you will incorporated into your life.

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I almost always rent a hotel room, condo, cottage or cabin with a kitchen when I travel. If I am traveling by car I bring everything I need including utensils and pots and pans. I premake the main meals, freeze them and put them in a cooler. I also make sure I have lots of gluten free snacks. When we get to our destination we go to the grocery store and buy the rest such as eggs and milk.

When traveling by air I research where to buy gluten free food and resturants. When my diet was gluten free, soy free and fat free I actually froze made all my main meals and froze them in single servings. I put the meals into a soft sided beverage cooler and wrapped a blue ice mat around the food. The meals were still frozen even after 7 hours. Also, bring at least 1 1/2 meals with your carry on luggage. No liquids or gels. Examples are jello and yogurt. Milk, soda, and juice can be purchased past security, otherwise I assume that I will not be able to find food in the airport terminal.

You can troll the internet for receipes. This site and other sites have many gluten free receipes. I do not attempt to recreate gluten filled meals. My objective is to make gluten free meals that taste good.

It will all get easier with time. You and your family will implement coping strategies that you will incorporated into your life.

HI MY BABY GIRL IS 2 AND SHE HAS BEEN TESTED FOR CELIAC IT WAS A POSTIVE TEST BUT I DON'T KNOW MUCH ABOUT IT. I'M VERY SCARED A SINGAL MOM AND I DON'T KNOW WHAT I 'M SOPOSE TO DO. PLEASE HELP :(

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HI MY BABY GIRL IS 2 AND SHE HAS BEEN TESTED FOR CELIAC IT WAS A POSTIVE TEST BUT I DON'T KNOW MUCH ABOUT IT. I'M VERY SCARED A SINGAL MOM AND I DON'T KNOW WHAT I 'M SOPOSE TO DO. PLEASE HELP :(

Don't be scared honestly, it's great that she has been diagnosed so young. What it means is no more gluten food for the rest of her life. Go here to this section

http://www.glutenfreeforum.com/index.php?showforum=10

It is specially for parents of babies and children diagnosed with Celiac Disease

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carecare,

Here is a list that you need for your next shopping trip

http://www.glutenfreeindy.com/foodlists/in...donothidegluten

This is a list of mainstream companies that list their gluten on their labels. So if it doesn't call out wheat, rye, barley, or oats, then it's OK (even if it has my least favorite phrase of all time: natural flavoring).

When my daughter was diagnosed, I went through the mourning period for her. I knew what she was giving up, she didn't. I think one of the best things that I did was to make some homemade treats. I made gluten-free cupcakes and cookies. They turned out great and have only gotten better as I have gotten more experience. Look in the recipe/baking section for hints to minimize 'flops'. That first batch of choc chip cookies made all the difference in the world. We didn't feel 'deprived' . . . how can you feel deprived if you can have a choc chip cookie?

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Thank you for list :)...that will be a tremendous help. I just ordered a shopping guide from amazon too...maybe I didn't need to do that..:P That's ok...I'll have that in my purse at all times too.

Yes...I've been making treats too...my first batch of cookies were choc. choc. chip and the kids enjoyed them...along with a very happy husband. My first batch of bread was horrible...and tasted sooo bad...and so did my first batch of banana bread. But today...with a different mix I made both and they tasted sooo good. You would never think they were gluten free. :) The bread was such a good surprise. Now to figure out how to do that without a prepared flour mix because I really need to figure out how to make this more economical. I can't believe how much I'm spending at the grocery store!!!! :( I figure once I have my own flour mix that I've prepared myself it will be so much cheaper than buying it already made. Time to go look at the recipe and baking section. Anyway, the brand of mix I used for the bread was "Life Beyond Wheat" and it really turned out good. :)

My 13 yr old called me from school yesterday asking if I'd bring her a gluten free lunch because she didn't want to eat the school's gluten filled food..LOL. I rushed together a lunch and brought it right to her. She's really on board with this too now and wants to see if it helps her joint pain, ADD and anxiety. I so hope it does.

Thanks everyone for all the replies. Helps a ton to have someone to help me through this.

carecare,

Here is a list that you need for your next shopping trip

http://www.glutenfreeindy.com/foodlists/in...donothidegluten

This is a list of mainstream companies that list their gluten on their labels. So if it doesn't call out wheat, rye, barley, or oats, then it's OK (even if it has my least favorite phrase of all time: natural flavoring).

When my daughter was diagnosed, I went through the mourning period for her. I knew what she was giving up, she didn't. I think one of the best things that I did was to make some homemade treats. I made gluten-free cupcakes and cookies. They turned out great and have only gotten better as I have gotten more experience. Look in the recipe/baking section for hints to minimize 'flops'. That first batch of choc chip cookies made all the difference in the world. We didn't feel 'deprived' . . . how can you feel deprived if you can have a choc chip cookie?

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Hi Carecare,

You might want to check out this link, it has a search feature for gluten-free restaraunts in various cities. If you search on zip code 20002 you will find some within the 25 mile range. They don't have all gluten-free restaraunts listed, just the ones that participate in the GFRAP program. I've read that PF Chang's Chinese also does gluten-free meals. I've read that it is a good idea to call ahead in the afternoon to let the manager know you will be requesting a gluten-free meal, so they can prepare..

http://www.glutenfreerestaurants.org/zip_search.php

Here are links to a couple DC local support groups:

http://www.csaceliacs.org/Chapter_Pages/DC...oNVAChpt100.php

http://www.dcceliacs.com/

I am not part of these groups, but they might more info on local eating. There are quite a few Whole Food stores around DC that have gluten-free foods. And the Yes! Organics markets have some too, most of the regular Safeway and Giant groceries have some gluten-free frozen foods.

Don't forget to check the labels on your vitamin pills also for wheat. Many of them have it as a binder.

Paul

(Working on my first full gluten-free month but still not there yet.)

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