Celiac.com Sponsor (A1):


Join eNewsletter


Celiac.com Sponsor (A1-m):



Join eNewsletter

Archived

This topic is now archived and is closed to further replies.

carecare

Having A Tough Time...

Recommended Posts

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

Share this post


Link to post
Share on other sites

Celiac.com Sponsor (A8):

Celiac.com Sponsor (A8):


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

Share this post


Link to post
Share on other sites

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


Tiffany aka "Have I Mentioned Chocolate Lately?"

Inconclusive Blood Tests, Positive Dietary Results, No Endoscopy

G.F. - September 2003; C.F. - July 2004

Hiker, Yoga Teacher, Engineer, Painter, Be-er of Me

Bellevue, WA

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites

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.


I am a German citizen, married to a Canadian 29 years, four daughters, one son, seven granddaughters and four grandsons, with one more grandchild on the way in July 2009.

Intolerant to all lectins (including gluten), nightshades (potatoes, tomatoes, peppers, eggplant) and salicylates.

Asperger Syndrome, Tourette Syndrome, Addison's disease (adrenal insufficiency), hypothyroidism, fatigue syndrome, asthma

------------------------------------------------------------------------------------------------------------------

Share this post


Link to post
Share on other sites

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

Share this post


Link to post
Share on other sites
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.


Courage does not always roar, sometimes courage is the quiet voice at the end of the day saying

"I will try again tommorrow" (Mary Anne Radmacher)

Diagnosed by Allergist with elimination diet and diagnosis confirmed by GI in 2002

Misdiagnoses for 15 years were IBS-D, ataxia, migraines, anxiety, depression, fibromyalgia, parathesias, arthritis, livedo reticularis, hairloss, premature menopause, osteoporosis, kidney damage, diverticulosis, prediabetes and ulcers, dermatitis herpeformis

All bold resoved or went into remission in time with proper diagnosis of Celiac November 2002

 Gene Test Aug 2007

HLA-DQB1 Molecular analysis, Allele 1 0303

HLA-DQB1 Molecular analysis, Allele 2 0303

Serologic equivalent: HLA-DQ 3,3 (Subtype 9,9)

Share this post


Link to post
Share on other sites

Perhaps he is 'temporarily' lactose intolerant?


Husband has Celiac Disease and

Husband misdiagnosed for 27 yrs -

The misdiagnosis was: IBS or colitis

Mis-diagnosed from 1977 to 2003 by various gastros including one of the largest,

most prestigious medical groups in northern NJ which constantly advertises themselves as

being the "best." This GI told him it was "all in his head."

Serious Depressive state ensued

Finally Diagnosed with celiac disease in 2003

Other food sensitivities: almost all fruits, vegetables, spices, eggs, nuts, yeast, fried foods, roughage, soy.

Needs to gain back at least 25 lbs. of the 40 lbs pounds he lost - lost a great amout of body fat and muscle

Developed neuropathy in 2005

Now has lymphadema 2006It is my opinion that his subsequent disorders could have been avoided had he been diagnosed sooner by any of the dozen or so doctors he saw between 1977 to 2003

Share this post


Link to post
Share on other sites
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.

Share this post


Link to post
Share on other sites

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.


Phyllis

Gluten Free - 30 years

Share this post


Link to post
Share on other sites
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 :(

Share this post


Link to post
Share on other sites
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


Diagnosed Eczema 1964 aged 16 but with what I know now from research am sure it was Dermatitis Herpetiformis

Diagnosed Irritable Bowel Syndrome 1969 at age 21 but had it from age of 12 many painful episodes over the years( was probably Coeliac all along)

Diagnosed Hashimoto's Disease/Hypothyroid November 1994

Low B12 November 2006

Low B12 (still!) July 2007 Docs are happy with results just above low end of normal..*sigh*....still need to resolve it

Gluten free since October 2006 after failing gluten challenge

Diagnosed Hiatus Hernia and Los Angeles Grade A reflux via endoscopy October 2007

Diagnosed with Coeliac Disease via same endoscopy / biopsy October 2007 (took them long enough!) despite being gluten-free damage still evident although had been taking iron tablets for iron deficiency without realizing they contained gluten. Subsequent blood tests show :Positive Anti-Gliadin IgA EIA antibodies, Positive Endomysial antibodies ,Positive tTG IgA antibodies of 300 ("normal" range 0-15)

Auto-immune disease goes back at least 5 generations in my family (and counting) Mainly Type 1 diabetes and rheumatoid arthritis.

Number 1 Son has Type 1 diabetes ..diagnosed March 2007 at age 31, number 2 son aged 24 is A/I disease free so far ,daughter has lichen planus ( similar to psoriasis) diagnosed 2003 at age 17 am now wondering if it is DH but with flippancy of the young she won't get any testing done

Share this post


Link to post
Share on other sites

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?


Janet

Experience is what you get when you didn't get what you wanted.

animal0028.gif

Share this post


Link to post
Share on other sites

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?

Share this post


Link to post
Share on other sites

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.)


Proverbs 25:16 "Hast thou found honey? eat so much as is sufficient for thee, lest thou be filled therewith, and vomit it."

Job 30:27 My bowels boiled, and rested not: the days of affliction prevented me.

Thyroid cyst and nodules, Lactose / casein intolerant. Diet positive, gene test pos, symptoms confirmed by Dr-head. My current bad list is: gluten, dairy, sulfites, coffee (the devil's brew), tea, Bug's Bunnies carrots, garbanzo beans of pain, soy- no joy, terrible turnips, tomatoes, peppers, potatoes, eggplant, celery, strawberries, pistachios, and hard work. Have a good day! 🙂 Paul

Share this post


Link to post
Share on other sites