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Cyncyn

Please Help

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:( hello everyone, I don't know where else to turn to. After 2 years of hospital visits and about 45 pounds of weight loss i feel that celiac has started to take over my mind. Had a dizzy spell today and had to leave the office. I am 37 years old and feel like I am losin control. My husband is not supportive just kind of rolls his eyes when another symptom pulls me down.

i am 5 8" in height and weigh 104 pounds. I work out regularly when I have the strength to combat the bone pain that overtakes me. I have adjusted my diet but yet still have flare ups once in a while and absolutely no appetite.

My marriage is falling apart because I feel that I deserve the support and compassion with this. My husband doesn't understand I can't help it.

I have a daughter as well who is so worried about me even asked if I was going to die. I don't know what else to do. Last time I went for therapy they told me I was on the verge of a nervous breakdown I never went back i was determined not to let Celiac take me. that was 11 months ago and I find myself back here.

please help I don't know what to do

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:(  hello everyone, I don't know where else to turn to.  After 2 years of hospital visits and about 45 pounds of weight loss i feel that celiac has started to take over my mind.  Had a dizzy spell today and had to leave the office.  I am 37 years old and feel like I am losin control.  My husband is not supportive just kind of rolls his eyes when another symptom pulls me down.

i am 5 8" in height and weigh 104 pounds.  I work out regularly when I have the strength to combat the bone pain that overtakes me.  I have adjusted my diet but yet still have flare ups once in a while and absolutely no appetite. 

My marriage is falling apart because I feel that I deserve the support and compassion with this.  My husband  doesn't understand I can't help it. 

I have a daughter as well who is so worried about me even asked if I was going to die.  I don't know what else to do.  Last time I went for therapy they told me I was on the verge of a nervous breakdown  I never went back i was determined not to let Celiac take me.  that was 11 months ago and I find myself back here.

please help I don't know what to do

<{POST_SNAPBACK}>

Sorry to hear about your lack of support. This disease needs all the support it can get because it is so awful. Have you had your vitamin levels checked? This diet can be lacking in some things so perhaps that is part of the problem that would be easy to fix. Have your vit. D level checked for the bone pain. Are you getting calcium? Sunlight? It sounds simple but sometimes you just need a little something. Hang in there.


gluten-free since 5/03, dx w/positive bx 5/03, neg. labs 7/03

DQB1,1 (subtype 6,6).

Hashimotos/Graves thyroiditis (ablated), osteoporosis, and too many more to mention.

casein free/dairy free 11/05, since positive enterolab casein test

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Sorry to hear about your lack of support.  This disease needs all the support it can get because it is so awful.  Have you had your vitamin levels checked?  This diet can be lacking in some things so perhaps that is part of the problem that would be easy to fix.  Have your vit. D level checked for the bone pain.  Are you getting calcium?  Sunlight?  It sounds simple but sometimes you just need a little something.  Hang in there.

<{POST_SNAPBACK}>

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<{POST_SNAPBACK}>

Thank you kelliac.

this is the part that is so confusing. I have had all my levels checked and evertime they come back the doctor telle me they are great higher than normal. I have had a scan for Ostioperosis (sorry don't know how to spell it) and they told me everything was ok. But after a dentist visit they told me that I was losing bone mass in my jaw which means I will probably loose my teeth.

Is there anyone who has had this experience or anyone whos knows what the effect on the mental state is? I go from one extreme to the other from a sobbing baby to a witch from hell.

the doctors just keep sending me for blood work. I have had possibly every test.

any suggestions?

Great site by the way I am happy to know that I am not alone.

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Are you absolutely positive you are completely gluten free? Nothing in a skin cream, hair spray, shampoo, pet food, anything, that could be getting into your system? Is your house gluten free or are your husband and daughter eating gluten, leaving crumbs, using flour, etc. that could be cross contaminating your food? If you are still getting gluten, even very tiny amounts, you will not heal.

Debbie

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You are not alone and have come to a good place for support. How long since you were DX'd? Are you sure that you have eliminated all of the gluten from your diet--using separate toaster, cutting board, pans etc.? How about personal care products such as shampoo, soap, makeup (especially lipstick)? From personal experience, I know that it can take very little gluten to make some of us sick. Also, you would want to check out where you eat at work and if you eat out, there is a good chance for cross contamination there. Do you take any vitamins? I do and I feel that they are helping me--hope this helps, feel free to come here and ask anything. :)


Patti

"Life is what happens while you're busy making other plans"

"When people show you who they are, believe them"--Maya Angelou

"Bloom where you are planted"--Bev

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this is the part that is so confusing.  I have had all my levels checked and evertime they come back the doctor telle me they are great higher than normal.  I have had a scan for Ostioperosis (sorry don't know how to spell it) and they told me everything was ok.  But after a dentist visit they told me that I was losing bone mass in my jaw which means I will probably loose my teeth. 

any suggestions?

Great site by the way I am happy to know that I am not alone.

<{POST_SNAPBACK}>

Which scan did you have? I know of a couple women who had the heel scan come back normal but the hip and back scan were really off (bad). They insisted on it because they didn't believe the heel one. Do you have a copy of your scan? How many times does the doctor say the tests are normal but when you get a copy and look at it, the numbers are either on the low side of normal or high side. They just aren't abnormal enough to be flagged as such. Get a copy and have some one else look at it for you.


gluten-free since 5/03, dx w/positive bx 5/03, neg. labs 7/03

DQB1,1 (subtype 6,6).

Hashimotos/Graves thyroiditis (ablated), osteoporosis, and too many more to mention.

casein free/dairy free 11/05, since positive enterolab casein test

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so sorry cyncyn...

most likely you can get more control over celiac than you have now. first things first... so have you been gluten-free for 11 months then? are you sure you are completely gluten-free, including products, makeup etc? are you currently seeing a doctor? have you put any weight on since going gluten-free? from the numbers, you must be tiny! is bone pain and fatigue your only symptoms? i would say cut yourself some slack and lay off the working out until you get yourself together. if you are having trouble making it through the day, no sense is giving your body more to handle. you will be able to work out again when the time is right.

i understand being close to that breakdown...you can only hold it together for so long girl. i am sorry for your husband's lack of support. that has to be very discouraging. let's get through the practical stuff first, and then we can brainstorm about how to get your husband understanding your side again... that can be a hard thing. you said you aren't hungry, what is a typical day of eating look like for you--foods, etc? i guess i'll start with those questions. we are glad you are here now!


~~~~~~~

Jen

Indianapolis, IN

gluten-free since Feb 2005

dairy-free

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I horrible that you get that treatment from the one who's supposed to love you and protect you most. You don't deserve that. But you've come to a great place where a lot of great people will support you and give better advice than most doctors.

My son has celiac disease and has been gluten-free for almost four months. He's still pretty skinny and has improved on symtoms, but not 100%. I'm getting ready to ask his doctor if I can give him something to increase his appetite, like Periactin. Does anyone know if there's something Celiacs can take to gain weight?

In the meantime, my prayers are with you.

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Sorry to hear that you don't have the support from your husband. It is tough to go through this disease alone. The last time that I went to the doctor I insisted that my husband go in with me to discuss everything with the doctor. This seemed to help him understand.

I have alot of joint pain and bone pain too, but my scans are not that bad. My doctor treats me for Fibromyalgia, and as long as I take Ultram and exercise the pain is less.

I hope that things get better for you. Please keep us updated on how you are doing.

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Cyn

As the mate of a recently diagnosed celiac, I can tell you that it could take a while for depression to leave fully. You might seem OK to co workers and friends but like my husband, I see the man at home and know the struggle he has to keep a positive outlook. I know he has good days and bad days. He's been gluten-free for two years now and he's still not out of the woods depression wise or weight wise (is down to 134 lbs from a healthy 170 in the 'good ole days'). My husband too eats 100% gluten-free, I keep a gluten-free kitchen and he still has good days and bad days; that seems just to be the nature of the "beast." Re-analyze your diet and kitchen set up as the others on board mentioned that perhaps you are getting cross-contaminated. Are you using the family toaster? Are you sharing any cooking implements with family members that eat gluen? Are you eating processed commercial foods from supermarket that could have cross contamination? Are you eating in restaurants (not that restaurants are a no-no, but if you are maybe you should suspend this for a while until some of your more immediate symptoms are gone....) Perhaps you have sensitivities to other foods as some on this board do.

It's a hard road that you're going down. I would guess that your husband is mad at your disease and not you, but he's taking his frustrations out on you. As the spouse, I am mad at God, the world, etc. for all of this. But I focus on how I can help my husband get over these hurdles and sometimes just have to let him figure it out himself and give him space to come to terms with celiac on his own.

Do you go to celiac support meetings near your home? If there is one, you and your husband should go as a team.

The hardest part of this as the spouse is the worry about "what's next." I suppose some spouses get frustrated and want this problem to just go away and are impatient with the slow or lack of progress.

How would your husband react if, out of the blue, you someday say to him with out sarcasm in your voice, without laughing: Thank you for your sticking by me thoughout this. I'm glad I can count on you for your strength. Now you might not be feeling this way, but in a way you are telling him what you need from him and maybe he'll start behaving that way because he will see that if/when he does, it creates a positive reaction from you. Sort of like behavior modification....but you can never let him know you are doing it.....

Just some thoughts on this.


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

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My son has celiac disease and has been gluten-free for almost four months.  He's still pretty skinny and has improved on symtoms, but not 100%.  I'm getting ready to ask his doctor if I can give him something to increase his appetite, like Periactin.  Does anyone know if there's something Celiacs can take to gain weight?

In the meantime, my prayers are with you.

<{POST_SNAPBACK}>

If your son can have milk products my DS and I used Carnation Instant Breakfast (milk chocolate flavor, not all flavors are gluten-free at least one has malt so read labels). We added one or two milkshakes a day made with 2 packets powder and sometimes add ice cream for a few more calories. I also add a banana (or other fruit) and some protein powder if I am in a hurry and want a smoothie breakfast. My son has celiac induced gastroparesis so it is hard for him to get enough calories to gain and this helped a lot, and it tastes good. Also before you go to a pill route to stimulate his appetite have you tried more frequent smaller meals? It will take a while for his system to recover I don't know his age but if he is in grade school be sure he is not getting glutened by the school chalk, pastes, clays etc. Hope this helps.


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)

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Are you taking any medications? Those can also contain gluten, so I'd talk to your pharmacist.

I hope you start to get better. Hang in there.


Gluten-Free since September 15, 2005.

Peanut-Free since July 2006.

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Check any non prescription medications also - like vitamins, sinus meds, anything else.

Also, be really careful about contamination. I use a lot of paper towels to prepare my food because the counter could have crumbs on in from my son making a sandwich and not sanitizing the surface afterwards. Just because you don't see any gluten there doesn't mean that there isn't any.

Check plastic containers, pots and pans and any other shared things that could have traces of gluten in them. They could have gluten imbedded in them that won't wash out very easily. I also have separate colanders for gluten and non gluten food because gluten can be stuck in the little holes.

Gluten (those little buggers) can hide anywhere. :(

I have found great help and support on this site. :) We are all in this together - you are not alone.

Good luck.

Cindy


Diagnosed with Celiac Disease April 2005

Diabetic

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Any chance it is your blood sugar levels?

I'm asking because this very same thing was happening to me. I got myself a blood sugar monitor and tested my sugar levels before eating, and then after eating at 30 minutes, 1 hour, 1.5 hours and 2 hours. I also tested first thing in the morning, and especially whenever I felt good, bad, dizzy, angry, etc.

I found this:

-high sugar=nervousness, brain fog, too excited, feeling like jumping out of my own skin, extraordinary hunger (which is not helped by eating),

low sugar = stiffness, slow brain, sadness, great anger, sleepy

sudden rise in sugar (within 30 minutes) = muscle pain, headache, hysteria

sudden drop in sugar (within 30 minutes) = almost feeling drunk, or like I have a bad hangover.

Everyone reacts differently, but the key is to find out what foods are doing this to you. I had to learn how to eat in a whole different way, and I honestly can say that my life of cycling between Mother Theresa and a Werewolf is behind me (now I'm a very pleasant mixture of the good things from both :)

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You have said that you have had every blood test available, but I just wanted to double check and make sure you have had your thyroid checked.

Also, don't make the mistake I made with over the counter drugs. I found out that Gax X Chewable Tablets had gluten in them and I was eating those suckers like candy because I had so much gas....... Maybe if you post a list of things that you take, we might be able to spot any hidden sources......

Regarding the lack of support from your husband, I truly believe it's a "guy" thing. They just don't seem to be able to "wrap their head" around the idea that something as simple as eating something can wreak so much havoc on our systems. The only guys who seem to "get it" are the guys who frequent this forum because they themselves are living through celiac disease!!!

Good luck!

Karen


Karen

positive bloodwork, positive biopsy

Celiac, collagenous colitis, hypothyroidism

endometriosis (at age 20)

spinal stenosis (early 20's)

Biopsy August 2006 confirmed complete villous atrophy despite being gluten-free for years and bloodwork within range showing compliance with diet. Doctor has confirmed diagnosis of Refractory Celiac Sprue.

Endoscopy also showed numerous stomach ulcers, have started taking Losec.

Mother to Eileen 13 yrs

Rhiannon 8 yrs

Daniel & Connor 6 yr twin boys......

"Joyfulness keeps the heart and face young. A good laugh makes us better friends with ourselves and everybody around us."

Orison Swett Marden

Laughter is the shortest distance between two people.

-- Victor Borge

"An optimist laughs to forget. A pessimist forgets to laugh."

Tom Nansbury

"Doctor to patient: I have good news and bad news. The good news is that you are not a hypochondriac."

Unknown

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:( hello everyone, I don't know where else to turn to. After 2 years of hospital visits and about 45 pounds of weight loss i feel that celiac has started to take over my mind. Had a dizzy spell today and had to leave the office. I am 37 years old and feel like I am losin control. My husband is not supportive just kind of rolls his eyes when another symptom pulls me down.

i am 5 8" in height and weigh 104 pounds. I work out regularly when I have the strength to combat the bone pain that overtakes me. I have adjusted my diet but yet still have flare ups once in a while and absolutely no appetite.

My marriage is falling apart because I feel that I deserve the support and compassion with this. My husband doesn't understand I can't help it.

I have a daughter as well who is so worried about me even asked if I was going to die. I don't know what else to do. Last time I went for therapy they told me I was on the verge of a nervous breakdown I never went back i was determined not to let Celiac take me. that was 11 months ago and I find myself back here.

please help I don't know what to do

I know exactly how you feel although I was going thru my

divorce when I started getting sick. I had a boyfriend once

call me silly celiac right before he forced a kiss on me when

I asked him not to because he was drinking a beer. (his dr. has

since diagnosed him with a heart condition and told him to go

on the same diet that I am.) The next day I miserable. I believe

that you can be more sensitive than

we can really imagine. I have picked my son up from day care

and gotten sick from cookie crumbs on his clothes. I know people

who are allergic to peanuts that can't even smell peanuts without

getting sick.

I know how you feel about you life. It has been up hill all the

way. Now I am with a wonderful man who stays on the diet

with me and loves to discover new ways to cook old foods.

I have found that if I stay away from foods that I call "dry,

flakey, and pasty (which leaves eggs, nuts, and green veggies)

I do fine.

Its your life. Whether your husband supports you or

not. You don't have to let it get you. You have to get

it. Your diet may have to be even more extreme than

you just illiminating gluten. Mine is after almost 10 years

of being sick. It's not easy. But I am just glad that I have

realized how serious it is and I can do something about it.

some of the things I do to stay well are:

Clean off the grocery cart before I use it

I don't even make sandwiches for my kids

watch shampoo and conditioner labels

watch lotion labels

I stay away from all foods with carbs

I do not eat spenda. (I am an emotional wreck the next day if I do)

Drink potatoe vodka or rum. (probably more than I should lol)

I shop on the outside parameters of the grocerey store (veggies, meats)

Good luck. You are not alone. I am a single mom

with 4 kids. It has been quite a trip. But WE are

going to make it.

And thank God for this forum. There is enough support here

to make up for what you don't have at home.

K

Being sick does have a huge physc. effect on you. This is

your life. Even

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