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Help And Advice Needed


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12 replies to this topic

#1 BamBam

 
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Posted 16 October 2004 - 04:42 PM

Hi, this is BamBam's husband. I need some advice please. My wife thinks she can't eat anything now! She has lost close to twenty pounds in the last six months, and she I really believe she has some depression issues here regarding all of this. I am really worried about her. I support her as much as I can, it is just the two of us here in the house, so whatever she cooks is alright with me, it;s just she doesn't eat. My question is, is there anything wrong with the normal canned tomatoes and vegetables that a person buys at the store? Is there anything wrong with fresh meat (I understand there might be something wrong with turkeys?) but I just don't get it. She bought several boxes of gluten free items, and they just sit in the pantry. She does 90% of the cooking, as I teach out of town and am home fairly late most of the time. She eats when I am home, but I don't think she eats anything the rest of the day. Can you help me to give her some good advice? I was reading some of the other articles with her the other night, and I saw Pastor Dave's wife was even sending some notes and things, so I figured I could ask for some help.

VWM
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Montana
Self-diagnosed after many tests and no results to feel better
Gluten Free since 8-6-2005
Lactose free for many years
Casein Free since 02/14/06

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#2 darlindeb25

 
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Posted 16 October 2004 - 06:41 PM

i cant remember--has it only been a few months since she has known she is celiac?????? sometimes it takes a while for us to adjust to this new lifestyle--when i 1st found out, i lost a lot of weight, there was a lot of ingredients that i guestioned and it was so much easier to just stick to what i knew--those 1st several months i ate a lot of cottage cheese and fruit or caramel corn cakes with peanut butter--over the 1st year, i know i lost around 40#, but i was one of the overweight celiacs and so many changes go on inside of us as we do get gluten-free--for now, i think you are doing good--keep up being supportive--it means so much to have the support of the one you love--my sister's husband went online and found so much information for her and my man is good too--he reads the ingredients of everything---like i said--stay supportive and keep watching to make sure she doesnt lose too much--deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#3 tarnalberry

 
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Posted 16 October 2004 - 07:58 PM

I'm sorry to hear it's going so rough for her. If she got really sick from it, it may be a psychological block to eating - she doesn't want to feel sick, and eating is what made her feel sick, and now she doesn't feel anything is safe. I think "slowly but surely" is the only way to go here, and perhaps keeping plenty of PLAIN whole, nutrient dense foods around the house will help. Nuts can be easily eaten, and if bought in the shell, unadulterated, she may feel less insecure about them. Plain rice and plain meats are good (though do check labels, I've found ground beef with wheat). Canned items are fine as long as they don't have natural flavors, but if she's very afraid of getting sick, it's better to stay away from these packaged foods until she can learn to trust them again. If she's showing significantly less interest in things that normally interest her, and is tired all the time, it could be worth talking to a psych to help her with this; it could be situational depression.
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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

#4 debmidge

 
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Posted 22 October 2004 - 01:48 AM

To BamBam's Husband:

The thing with the Turkey is that Butterball's Self Basting whole turkey is off limits because Butterball injects it with a gluten-based self basting substance.

For turkey try these brands: HoneySuckle White or Riverside. Both state GLUTEN FREE on their label. Perdue claims that their chicken and turkey are both gluten free (1-8004perdue to verify). A lot of time is spent on phone to find out if something is gluten free or not.

I agree, your wife probably is avoiding eating just like my husband (he is celiac, I am not). My husband wishes he could exist without ever eating again. My husband lost a total of 45 lbs. and he was not significantly overweight (5'10" from 175 to 130). He hasn't gained any back after being gluten-free for a year.

Depression goes hand in glove with this disease: depression from being ill and knowing it; and depression from the chemical reaction due to the gluten itself. The chemical reaction will lift eventually, but the depression from this life changing experience can be ongoing as long as the symptoms are still present.

Has she been to a Celiac Support group yet? They are there to help newly diagnosed. Do you have a product guide either the Shelley Case publication or the publication from the Celiac Sprue Assoc.? Or go to the Clan Thompson website to revew their gluten free food list? Even the Home Page to this forum (celiac.com) has info on what supermarket products are or are not gluten free.

I have a suspicion that you are downplaying her depression issues because it hurts so much to see a loved one going thru this and you really can't believe it yourself. I have a feeling that she knows to eat when you are not home, but are too depressed to do it. My advice is to attend support group at night with her, read up on what her food choices are (knowing each brand name that is gluten-free). I realise that she is an adult, but due to the depression, she needs this: in evening when you get home from work, ask her what her plans are for next day and casually ask her what she's going to eat. My husband isn't working outside of home, so this is what I had to do the day before so that I knew he was going to eat properly. Sometimes I had to go to supermarket or health food store myself to stock up as he had no motivation to take an interest himself. I had to take charge and make the stuff myself the night before so that he'd have left overs to eat the next day while I was at work.

Don't be shy, feel free to communicate with those on this board whenever you can. Take a look at the Ingredient and Receipe boards as you might find other answers to your questions.
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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 2006
It 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

#5 Ruth

 
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Posted 29 October 2004 - 04:35 PM

Do you think maybe she is afraid of gaining weight? I know when I first discovered I had celiac disease a good friend told me she new someone with celiac disease who went gluten-free and gained a lot of weight (from the point of being too thin, as many of us are/were to being very over-weight.)
I know this made me think twice before enjoying all the gluten-free treats out there... and even some of the basics, like bread. I got over it, gained some weight...and am so much healthier now!

I don't know your wife's situation...or her personality. But hopefully she will see that if she needs to gain weight she will --- and will be better for it.

Sometimes "everything in moderation" is hard at first, espeically if you have lived eating whatever you want without gaining any weight for most of your life.

Best of luck,
Ruth
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Diagnosed 3/03 (Positive Biopsy/Negative Blood Tests)
Daughter dx 12/03 (Positive biopsy/Positive blood tests);
Two sons (Negative blood tests); One on gluten-free diet (6/04) ... cured his persistent, severe headaches.

#6 Guest_PastorDave_*

 
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Posted 10 November 2004 - 12:53 PM

Hey, this is Pastor Dave's wife (I guess I need to get my own user name!)

Just one more thing that I did not see recommended (that as a nurse I can not leave out!) - it may be necessary to get your wife an appointment with a doctor to make sure that she is not anemic or having other nutritional issues from the weight loss and loss of appetite. Although nutritionists are not the best with gluten free issues usually, they have some great nutritional information for nutrient deficincies. And a doctor would also be able to screen her for clinical depression (and, or) an eating disorder. Sometimes when you are confronted with such a drastic change it can just make not eating seem so much easier.

The idea to have easily microwaved "leftovers" or preprepared meals is great. When my husband worked long hours while we were in school - I never ate unless he was there - it was just too much trouble to cook for myself. Finally when I got pregnant and still was not eating we started making double at dinner so I would have easy to prepare food in the fridge. It worked!

It is also very helpful to have a good supply of "normal" things in the house to eat. I buy rice pasta by the box! So we can have spagetti, lasagna, and other favorite foods without worry. If you kick out (or separate the gluten free foods from the other foods) it is so much easier to just grab and not worry that your meal will be gluten free or not. There is nothing wrong with canned veggies and such from the regular grocery store. Just like with everything else, just read the ingredients.

PS - If she likes baked goods - try a new set of pans and "The Gluten Free Gormet Makes Dessert" by Bette Hagman. A supply of wonderful baked treats is great for weight gain! (and thanks to the nutricious grain selection when you are not using wheat flour, many are very nutricious!)
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#7 lovegrov

 
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Posted 10 November 2004 - 01:23 PM

Butterball turkey IS gluten-free. It is NOT injected with a gluten copntaining substance. I just got an e -mail from Butterball confirming this. Butterball turkey is gluten-free (and so is every other raw turkey I've ever checked or ever seen checked by somebody else).

richard
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#8 Guest_Addicted2Gluten_*

 
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Posted 10 November 2004 - 07:25 PM

I wouldn't be too concerned. When I first found out that I had Celiac Disease, I lost a lot of weight and barely ate anything. Most of the time when I went out to eat or even at home I would just drink hot tea and occasionally cook brown rice. But, I was so extremely paranoid about cross contamination or gluten being in the food, that I found it easier to just not eat. I also wasn't aware of all the mainstream products that are gluten free. I'm sure in some time she'll learn more about what she can and cannot eat so that the process of eating will become much easier again.
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#9 BamBam

 
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Posted 12 November 2004 - 09:11 AM

I'm finally able to tlk back with you guys, thank you for the responses. My wife has been diagnosed with depression and is on some new meds that we checked out, Zelnorm, Remeron and Gabitril.

My next question is what symptoms are there when she eats gluten by mistake? She is eating some, but just not very nutrition items, she is not fueling her body like she needs to and with the new meds she gets sick if she doesn't eat.
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Montana
Self-diagnosed after many tests and no results to feel better
Gluten Free since 8-6-2005
Lactose free for many years
Casein Free since 02/14/06

#10 ryebaby0

 
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Posted 27 November 2004 - 07:07 PM

Good for the two of you to get her some help in feeling better! Depression is such a misunderstood problem; hopefully she will feel better soon.
When my son "glutenates" himself, within an hour or so he starts to feel sick -- as in carsick. Eventually he will throw up a few times, and then he feels peachy. (Then we search for "what the heck did you eat?")It is different for everyone, and it's not uncommon when you are first gluten-free to react much more, and to smaller quantities, of gluten.
If you can stand more advice, I would print out a copy of a gluten-free foodlist to hang in your pantry -- we keep one with the cookbooks, and take it when we travel. (I don't like the GIG advice papers lots of doctors hand out. Very scary and intimidating) My son is only 11 but is learning to read labels. Still, he vastly prefers food that is on some list --it's a security issue, and it might be for her, too. I make extra amounts of gluten-free stuff, and pop leftovers into containers as I'm plating the rest. It goes into the freezer and he is never without 'fast" food. Try ANDI bars, which are high in nutrients, and easy to eat. When food has made you soooo sick, it's hard to feel good about it. She's undoubtedly malnourished -- make sure she takes a multi. (Centrum brands are gluten-free, so are VitaBalls, which are more fun!) Try to arrange your life so you can do fun things without food, and try to do things you liked before the diagnosis. She is grieving for all the things she can't have, the life she expected, the convenience that is gone. You need to stay positive, try to assure her that things will get better. Send her here, too. :)

Joanna
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Mom/wife to celiacs dx 12/03 and 12/04


Success is never final and failure never fatal. It's courage that counts -George Tilton

#11 darlindeb25

 
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Posted 28 November 2004 - 02:52 AM

:D VWM---i need to add this-----pat yourself on the shoulder for being so supportive---i think it's wondeful that she has such a loving husband, one who cares enough to go looking for advice--my man is like that, but so many are not and it is refreshing to know there are many out there who are--you find them in this forum often----- :D deb
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Deb
Long Island, NY

Double DQ1, subtype 6

We urge all doctors to take time to listen to your patients.. don't "isolate" symptoms but look at the whole spectrum. If a patient tells you s/he feels as if s/he's falling apart and "nothing seems to be working properly", chances are s/he's right!

"The calm river of your life approaches the rocky chute of the rapids - flow on through. You are the same water. The rocks cannot hurt you. Remember, now and then, that you are the water and not the boat. Flow on!

#12 Seosamh

 
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Posted 28 November 2004 - 07:57 PM

BamBam,

When I was first realized that gluten was the culprit behind so many secondary illnesses, I became depressed--or rather my depression became overt. One of the main things that has helped me is that my long-time partner started shopping for gluten-free things and even baking gluten-free cookies and banana bread--her devotion and support showed me that this was possible. I'm sure your wife will appreciate your support--and, perhaps find her some really, really good gluten-free food that she particularly used to like.

Also, when I began to come out of my depression, I got angry. And, I'm still pretty angry about years of misdiagnoses and the fact that the illness won't go away. You might brace for that a bit too--or if it does come, recognize it for what it is.

Good luck!
Seosamh
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#13 tyki

 
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Posted 17 December 2004 - 09:18 AM

When I first figured out that celiac disease and gluten were causing my problems, there was a bit of relief to know what the problem was. However, that was short lived. My hubby and I made a commitment to go gluten-free for my health. We went through the kitchen and moved everything that had gluten in it to a seperate cupboard (when the Boy Scouts did their "Scouting for Christmas" drive, they got boxes of goods from our house. We purged the kitchen of foods with gluten (except hubby's individual serving sized diet meals - he's been on a special diet and lost 115 pounds this year).

Our next step was a trip to the grocery store. Well, it turned into a number of trips to the grocery, because unexpectedly I had emotional meltdowns in the store. I would think of a meal to fix and start to gather the ingredients for the meal, only to be met with everthing I knew to use having gluten in it. I was devastated, how could I hope to feed myself, let alone my husband when I couldn't come up with a single healthy meal without gluten. We couldn't go with just salads for the rest of our lives. At least twice I left an empty shopping cart sitting in the middle of the grocery aisle and left the store in tears.

Eventually, we found a few options...and our options have gradually expanded. For my lunches at work, I spend about an hour on the weekend preparing my own personal frozen meals (Johnsonville Italian Sausages (sliced thin), with stir-fried peppers and onion, and a serving of rice, seasoned with Lee & Perrins and some Wine Vinegar). After the holidays we are going to buy a freezer so we can have someplace to store pre-prepared meals. I bought soup bones from the butcher and boiled them to make beef stock (since boullion cubes contain wheat) and have the broth frozen and ready to be made into soups this winter.

I still have my rough times, times I don't want to deal with thinking so hard about what I CAN have. Its great at those times to have something already made in the freezer that I can throw in the micro, just to get the meal onto the table.

I've also always been the family holiday baker. I'm the one who has carried the family tradition recipes forward. As Thanksgiving approached, I went into meltdown again. I couldn't have the traditional treats, and had no desire to cook up things that would just remind me of what I couldn't have anymore. My hubby stood by me, and encouraged me to experiment, fix the recipes in a gluten-free mode and test the results on his office. I fought the idea, I didn't want to settle for second best, but eventually to prove to him it wasn't worth the effort I did it. He took the treats into the office and was told that if he hadn't said it was gluten-free, they wouldn't have known.

SO, before heading to my parent's for Thanksgiving, I tackled my grandmother's Nutmeat Bread using gluten-free Pantry's Sandwich Bread mix, and made up a gluten-free Pumpkin pie, and a tin full of coconut macaroons. Everyone was happy to have the nutmeat bread, they had no problem with it being gluten-free. The pie was gone in a flash, and the kids couldn't keep their hands out of the cookie tin. It was just like before I heard of Celiac.

The results at Thanksgiving were enough to give me confidence and I entered my gluten-free cookies in an office cookie competition for Christmas, and won. My dad talked with us at dinner and touched my heart. I made the link between my medical issues and celiac disease because of preparing for their 50th wedding anniversary, and have shared what I learned with the family since July. What Dad said was that, he admired my resolve to go gluten-free and would do what he could to support that. Then he turned to my grown brothers and sisters and told them, "Your sister is not the only one in the family that this effects." He then went on to say that my research had led him to look at his own health issues and discovered that he too is at least sensitive to gluten and milk, and that Mom feels better now that she has been on an Atkins diet and has cut out bread from her diet. He encouraged each of them to take a look at any lingering health mysteries they or their kids had, and explore the possibility of tracing it to gluten intolerance. He now knew that his Mother's inability to eat wheat (never heard the term Celiac, but we are convinced that was the issue) was not all in her head, it was real, and it was something we had inherited from her. My parents aren't going totally gluten free, but Dad is cutting back his wheat consumption to keep himself symptom free.

I still get down when I crave something and find out it has hidden wheat, but I'm beginning to deal with it better. Hopefully your wife will get back on track.
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