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I Need To Complain!


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#1 Littllemel

 
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Posted 16 April 2012 - 09:28 AM

I guess I just need to vent and complain a bit.

My Celiac biopsies came up negative but I definitely have gluten/dairy/soy/corn intolerance and leaky gut. I have had to give up my entire way of life just to live and breathe. My symtoms of leaky gut if I am glutened are severe hypoglycemia, dry mouth, gi problems, reflux and hormonal imbalances such as hot flashes, sweating and being extremely emotional for a minimum of 3 days. I have cried about this every day since going gluten free back on 3/4/12. My doctors suck because I have Tricare and I am forced to use the military system. I am considering switching to Tricare Standard but I will have to start all over again with the Dr issues.
This is the first time in my life I have even considered ending my life. That is how much I hate my new way of life now. But then I look at my beautiful 8 year son and think "no way" can't do it. But it does enter my mind, I can't lie.

To make things worse I had to start a rotation diet yesterday and I hate it. I hate being chained to my house and the grocery stores. All the prep and extra work I have to do to make sure I have food for the work day while sipping on my "yummy" bone broth! Watching others at work eat their hoagies, cakes and pizzas.

I guess I am having a hard time adjusting. Everyone tells me to stay positive and calm. I wish it were easy to do so. I will start seeing a ND on wednesday, I hope she can help me since I have to pay out of pocket. I am also going to start seeing my counselor again. I am sure I freaked a few of you out with my life ending revelations. It's too bad I can't take anti depressents either. I could really use some right now. I am sure a lot of you have it a lot worse then I do but I really can't stand this and I just need a friend to tell who really understands what I am going through and says anything other than "i don't know what to tell you or how to help you" when I tell my story. Is anyone else in Virginia?
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Gluten Free since 3/2/2012
Dairy/Soy/Corn Free since 04/06/2012
Leaky Gut 5/2012
Candida 09/2012
Porphyrins in Urine 10/2012

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#2 Adalaide

 
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Posted 16 April 2012 - 09:55 AM

I've heard horror stories of the awful medical care we give to the men, women and families who serve our country. I can sort of relate as I currently have medicaid so I had total crap for insurance myself.

It's easy for everyone else to say to just buck up, look on the bright side, blah blah rainbows and sunshine and other useless crap. When I started this, not only did I not see a bright side but I didn't want to see it or even know it existed. I bawled like a child until my head hurt and I had hiccups and I was still crying. I thought it would be too hard, I didn't think I could do it.

Everyone here helped me so much and I'll tell you what they all told me. It's okay to be sad and cry. I didn't pull myself up by my bootstraps, and no one told me to, but they gave me the courage to at least keep my boots where I can find them.

When you have your moments when you just can't do it any more, keep reminding yourself that you have a boy who needs you. Many here have been where you are, it is depressing but it does get better. If you truly come to a moment where you are at risk of hurting yourself call a hotline and talk to someone.

I'm not sure if it's possible for you, but maybe a week or even a few off through FMLA could help you. At least then you wouldn't have to watch people eat what you are craving so much at this very difficult time.

Most of all ((hugs)) and remember you aren't alone.
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"You don't look sick or anything"

"Well you don't look stupid, looks can be deceiving."

 

Celiac DX Dec 2012

CRPS DX March 2014


#3 psawyer

 
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Posted 16 April 2012 - 10:07 AM

Mel,

It is okay to be angry. Finding answers can be hard, and that is frustrating. The medical community often comes up far short of understanding.

You have come to the right place. This is a wonderful group of people who support each other. You will get through this with a little help from your friends.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

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#4 Jestgar

 
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Posted 16 April 2012 - 10:16 AM

It's okay to be sad and cry.
When you have your moments when you just can't do it any more, keep reminding yourself that you have a boy who needs you.

AND

find some treat that you CAN eat and keep that around for when you need to remind yourself that there are bright spots to be found.
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#5 mamajchis

 
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Posted 16 April 2012 - 10:29 AM

I also tested negative for celiac but I know I have it. I have almost all the symptoms of Celiac across the board. I know I have probably had it for 10-15 yr if not much longer. Living without gluten and all the foods you love is something that takes time to get used to but living with Celiac is so much worse.I have chronic fatigue, muscle and bone pain, colitis, diverticulitus, acid reflux, bloating gas, other GI problem. My mind wasn't working right. Could not carry on a conversation without the words getting all scrambled up. I have anemia and other vitamin/mineral deficiencies. I have to take Iron 3 times a day, monthly B12 shots, Potassium and Magnesium. I also take a multivitamin for women over 5o. Sill I am tested low on these things. I have been gluuten free since March 19 2012, so looking to find much improvements with my next lab tests. I have diabetesas well and cannot have sugar or very little. that is what I miss the most and do cheat some on that. I also have soy intolerance. Have you ever looked at the labels on pre-packaged foods? Almost everything contains soy, even ice cream.

I hope you can find acceptance of your disease! It is so much better to go gluten free than to suffer the consequences if you don't.
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#6 mamaw

 
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Posted 16 April 2012 - 10:35 AM

Just sending hugs your way! Part of the healing process is coming to terms with withever we each have been given.. Going gluten-free is ilke loosing a part of your being. From an early age we have been taught that the staff of life is good for us. Only now do we know wheat is not the staff of life any longer.. going gluten-free can cause extreme grief.......

It is not easy for everyone to be gluten-free, it will take time & understanding, no quick fixes but it will come . You may even make mishaps along the way but you will learn from them & grow & become healthy & happy....the main thing I know you don't feel like that at present but one day it all will fall in place...honestly...

You have come to a great group of knowledgable people, ask anything & one will answer...
Hugs & blessings to you



mamaw
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#7 bartfull

 
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Posted 16 April 2012 - 11:16 AM

I don't have the dairy problem, but gluten/soy/corn are my enemies too. I had to get Tylenol made at a compounding pharmacy. Maybe you could get some anti-depressants made?

What I have done to reconcile myself to the oh-so-limited diet is simply look at eating as I would any other bodily function. It is something necessary, it is something I do to survive, and once I have my meal out of the way, now it's time to get on with my day. Instead of looking at eating as a pleasurable experience, I look at eating as something I do so I can have the energy to do the things I love doing. Rather than thinking of the things (foods) I have had to sacrifice, I try to concentrate on the things (activities) I DON'T have to sacrifice anymore because I am no longer so sick I can't do them.

And I keep reminding myself that at least I don't need pills or surgery to get better. Heck, once you get the diet straight, you won't need a doctor at all!

Now all that said, yes, I too have days when it really gets me down. Those are the days I come here to cry on the soft and loving shoulders of the friends I have made here. I have found that no matter how much I whine, they are always helpful and supportive. A big (((((HUG))))) to you!
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gluten-free since June, 2011

Can't eat soy, corn, or foods high in salicylates.

Nightshades now seem to bother me too.

 

BUT I CAN STILL PLAY MY GUITAR AND THAT"S ALL THAT MATTERS!

 


#8 cdog7

 
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Posted 16 April 2012 - 12:53 PM

I can definitely relate I also had all the classic symptoms, and a celiac mother (who is also diabetic and dairy-free). But the doctors I had access to at the time I was tested were really behind on their celiac knowledge, and declared me 'negative' for celiac, after an inconclusive blood test and a biopsy that showed damage but not quite enough damage for their liking. I still don't believe it, and sometimes it makes me feel crazy. Another doctor I saw told me it sounded like a 'no-brainer' that I'm celiac, based on my family history and symptoms alone. But going gluten-free helped my health so very much, people still comment on how much healthier I am now, even how I look better. So, there's that to look forward to! But I know. It is a huge loss, basically it's like going through a divorce or a death I know I lost all my favorite foods at the time. I've since found some new favorites, especially from other international cuisines that aren't so based on gluten like American food seems to be. Definitely one secret to surviving is finding something you can still eat that is a treat for you. Whenever my coworkers are chowing down at a pizza party or whatever, I try to plan to have something special just for me. Takes more work to arrange, but it's worth it at that moment, when I don't feel deprived, and sometimes they're even jealous. Remember, what does not kill us makes us stronger! I hope you are able to find some comfort here, the people are really very supportive and helpful. And definitely, if you do feel like you're getting to the point of actually planning how you might hurt yourself, that's a good point to call someone who can really help. There's no shame in it, I've done that myself, and it really does help to talk to someone who is trained for these things. ((hugs))
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#9 Littllemel

 
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Posted 17 April 2012 - 04:34 AM

Feeling a little better today. I think the fact that my hormones are so messed up from this condition plus I had to give up my BC pills to heal my leaky gut. So I am getting so emotional all of the time. Maybe I should get on at BC patch. I think I am too afraid to do it since my hormones are so bad right now.

I seem to be better in the mornings and by afternoon it's waterworks again. I still hate it but I am glad that I at least have this forum to vent in. I would be lost if I couldn't do it.

I went to see my GP last night and I got the same old story. No help at all. I will start seeing my ND tomorrow. I really hope she can help me.
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Gluten Free since 3/2/2012
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Leaky Gut 5/2012
Candida 09/2012
Porphyrins in Urine 10/2012

#10 Bubba's Mom

 
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Posted 17 April 2012 - 07:43 AM

I've thought about ending it. If it were as easy as just going off gluten and everything would be fine..no problem. I seem to be reacting to more and more things though? I take away more favorite foods..and still not feeling good. I totally get your frustration. I see others around me blissfully living to eat, while I merely eat to live.

I haven't renewed magazine subscriptions, because the way I feel right now..who knows if I'll be here another year? I feel that bad. BUT I get up each day and try to make it through. I still keep a log of everything I eat in the hopes that "today" will be the day that I finally figure this stuff out..and can start healing. Today might be the day that I don't get a new symptom? :blink:

We have to remember there are others in our lives that need us, and taking your life is really very selfish. It's the ultimate hurt to our loved ones. They could react by never fully recovering,( with guilt, depression, anger, and a fear of bonding with anyone) and have a completely messed up life? We don't want that for them. We just want some relief..and to feel better.
Let's take one day at a time..and if that doesn't work..take one hour at a time..and if that doesn't work just take 5 minutes. Things will turn around. I'm sure of it.
(((hugs)))
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#11 Christine0125

 
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Posted 17 April 2012 - 08:06 AM

Is anyone else in Virginia?

No, but I'm in Maryland so potentially not too far depending on where you are. I've seen that there are some DC area support groups that look rather active. http://dcceliacs.typepad.com/. If you're in NoVA some of these meetings may be very close to you. I'm sorry the doctors are not helping you but I'm curious to hear how your NP appt goes. My doc was convinced it was my gall bladder causing issues... luckily she was willing to run the celiac tests but only after I researched on my own and asked for it. If it weren't for the internet and boards such as these I'm confident I would have had my gall bladder removed even though my symptoms were not classic. I've definitely learned you have to advocate for yourself. Good luck to you!!! There are days I feel like screaming as well. My kids school is doing a special program tonight and the PTA is providing pizza before so I'll be eating my gluten free sandwich which everyone else enjoys pizza! To top it off 500 people signed up to come and only about 5 volunteered (unfortunately this is typical) to help so I've now been recruited so I get to serve and help clean up all the yummy stuff I can't tough. ARGH!
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#12 Littllemel

 
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Posted 18 April 2012 - 03:07 AM

I woke up in another one of those moods. It's like I have one good day then one bad. Yesterday was great, but today I already had D twice. I feel like Im starving to death but I am always eating. At least today I see my new ND. I hope she is worth the $240 I have to shell out of pocket! I am also seeing a nutritionist with the military today, at least that is free.
I feel like Im wasting away, I am down to 103lbs and it never seems to stop. My back and kidneys hurt this morning, not sure what that is about. I think I might of slept funny though. I will tell the ND about it.
I can feel my emotions building up again today. I hope i can get through it.
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Gluten Free since 3/2/2012
Dairy/Soy/Corn Free since 04/06/2012
Leaky Gut 5/2012
Candida 09/2012
Porphyrins in Urine 10/2012

#13 Bubba's Mom

 
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Posted 18 April 2012 - 05:23 AM

I woke up in another one of those moods. It's like I have one good day then one bad. Yesterday was great, but today I already had D twice. I feel like Im starving to death but I am always eating. At least today I see my new ND. I hope she is worth the $240 I have to shell out of pocket! I am also seeing a nutritionist with the military today, at least that is free.
I feel like Im wasting away, I am down to 103lbs and it never seems to stop. My back and kidneys hurt this morning, not sure what that is about. I think I might of slept funny though. I will tell the ND about it.
I can feel my emotions building up again today. I hope i can get through it.

I hope the ND is worth it. I've never seen one. Please let us know how your meeting goes?

I didn't stop losing weight until they put me on the weak steroid they use for Crohn's.(Entocort) If you continue on the way you have been..maybe you should ask about being put on it? It's not a strong one that affects your whole body. It stays in the intestine, and knocks down the immune response just enough to let your villi heal faster.

Make sure you stay hydrated with that Kidney pain. It gets scary when various other organs start to act up. :o

Remember too.."to the world you are one person, but to one person you may be the world".
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#14 Littllemel

 
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Posted 21 April 2012 - 02:57 AM

I read an article today the microwaving your food causes toxins in the food. Have I just lost another tool I can't use? I have to microwave my leftover food everyday at work. Does this mean I will never heal my leaky gut. I just had to replace all of my teflon pans too. How am I going to warm up my food?? This thing is going to kill me!!
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Gluten Free since 3/2/2012
Dairy/Soy/Corn Free since 04/06/2012
Leaky Gut 5/2012
Candida 09/2012
Porphyrins in Urine 10/2012

#15 psawyer

 
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Posted 21 April 2012 - 05:30 AM

I read an article today the microwaving your food causes toxins in the food. Have I just lost another tool I can't use? I have to microwave my leftover food everyday at work. Does this mean I will never heal my leaky gut. I just had to replace all of my teflon pans too. How am I going to warm up my food?? This thing is going to kill me!!

Heating (cooking) anything edible releases toxins as the organic matter breaks down. It doesn't matter how the heat is generated. The amount is a function of how hot and how long.

It is all a question of degree. Moderate heat should not be a concern. Extreme heat for prolonged periods--well, that might be an issue. I don't worry about microwaves or Teflon in normal use.
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Peter
Diagnosis by biopsy of practically non-existent villi; gluten-free since July 2000.
Type 1 (autoimmune) diabetes diagnosed in March 1986
Markham, Ontario (borders on Toronto)

Celiac.com - Celiac Disease Board Moderator




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