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At My Wits End...


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16 replies to this topic

#1 jnh380

 
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Posted 03 May 2012 - 07:26 AM

Hi everyone,
I woke up this morning with a terrible stomachache and wanted to cry. I still want to cry. I just don't know anymore what is going on. I was given a diagnosis of celiac after a positive blood test and positive biopsy a few days ago. I have been on a gluten free diet for about 2 weeks.
I just don't know if this is the answer for my troubles. I have extremely high & chronic anxiety that takes over my whole life and it is hard to see clearly what is going on. I hope with all my might that the reason I feel this way is the celiac, and not some other horrible disease, tumor, or psychological problem. If I look back and analyze the last few years I start to wonder when it all started. I remember 2 years ago I spilled hot oil onto my hand and the burn mark took more than a year to heal completely. 18 months ago I started having tingling/numb hands, which I went to PT for and helped a little. about a year ago I fell into a major depression and have been unable to get out of it. I have done everything in my power to fight my depression. I am seeing a therapist, on antidepressants, and have been working on all the social and relationship issues I can possibly think of, and yet I still wake up with symptoms of anxiety that I can say are similar to the celiac symptoms. nausea, aches, gas, flatulance, etc.
I am just so scared and overwhelmed. I am putting myself through hell and right now I can't tell if anything is making a difference. I don't know how to find all the hidden gluten. Have I been missing some all along and my diet has done nothing to help me heal? How can I find the willpower to focus on my diet? What if I dont improve? Can anyone else relate to my experience and let me know it will be ok? I just need some guidance as I dont really have much contact with the doctors who have diagnosed me.
Just feeling blue...
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TTG positive, Biopsy positive, April '12
Elevated ALT, Bilirubin, low Vitamin D
Peripheral neuropathy, GI issues, joint pain

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#2 BabsV

 
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Posted 03 May 2012 - 07:51 AM

Aw hon, you are going to be ok. Really. It takes time...and 2 weeks gluten-free is not long enough to see results for a lot of us. Besides, you could be in the midst of gluten withdrawal which is no picnic. That does pass.

If I get glutened I have overwhelming anxiety plus some depression. It is as if I am in a bottomless pit with no hope of getting out. But that feeling clears up after a couple of days for me at this point (I'm almost 9 months gluten-free.)

When you are newly diagnosed it is overwhelming and scary, and I swear I thought EVERYTHING had gluten in it. I was a mess physically and emotionally plus completely overwhelmed by the diagnosis even though I was really really happy to finally have a diagnosis after being so sick with doctors who were telling me it was "all in my head"! There is a steep learning curve with the diet, cleaning out the kitchen, shopping, medicines, etc. It does get easier and better.

Check out the post, Newbie Info 101, in this forum by IrishHeart; it is pinned at the top of the forum. It has invaluable information.

And know that you can come here at any time vent and get support.
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#3 adab8ca

 
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Posted 03 May 2012 - 07:51 AM

First, huge huge hugs. I can totally relate.
Second, two weeks is a DROP in the bucket of time. These things take a long time to heal.Myself, I was diagnosed by a fluke by a neurologist when I had TERRIBLE pain in my nerves. I thought I was going to end up in a wheelchair. My feet could NOT touch the bed when I slept, the pain was so bad. It took a long time to feel better. I was also VERY depressed and had huge anxiety. All of these neurological manifestations can take a while to heal. I can tell you that the nerve pain is MUCH better and manageable and I am off the antidepressants. I am probably healthier in many ways than I have ever been.
I too have no contact with the Dr's, no followup. The GI dr said "Stop eating gluten and you should feel better in a few days". Well, that was crap. Everyone heals at a different rate.
I bet that the Celiac is making you so, so depressed and anxious. The one piece of advice I have is to be very, very gentle with yourself. Take it one day at a time. Eat whole, unprocessed food that will will limit potential cross contamination. If you haven't done so, give up dairy until your intestines have a chance to heal.
If you don't feel well, don't push yourself. You WILL get there.
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TTG >200 (normal <10)
IgA gliadin 24 (normal <11)
IgG gliadin 38 (normal <11)
Endoscopy showed damage that looked like "classic celiac", biopsy showed total villous atrophy
Started gluten-free diet Aug 31, 2010
Only real symptoms are huge weight loss and neuropathy

#4 jnh380

 
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Posted 03 May 2012 - 11:05 AM

Why has my reaction to gluten gotten so much more severe now that I have tried to stop eating it? I mean it was only a few days ago I was eating a ton of bread, pasta, and beer. and now it seems like i may be having strong reactions to it, like i have one thing the night before and i feel like utter garbage for the whole day afterwards. How come that didnt happen before?
Thank you guys for the support. I remember the way I used to be and I want so badly to get back to that way of life. It has been such a downward spiral and I (wrongly) attributed it mostly to psychological weakness, that I was losing control, going crazy, or there was something wrong with me. I just still have a lot of doubt that it is celiac and that I will get better. I know it is irrational. I know that I have a real diagnosis but I still don't quite believe it.
I wish I could take a month off and go to something like a recovery center or something. Life is so difficult to manage even without a disease. I just want the panic attacks and anxiety to subside.
  • 0
TTG positive, Biopsy positive, April '12
Elevated ALT, Bilirubin, low Vitamin D
Peripheral neuropathy, GI issues, joint pain

#5 ravenwoodglass

 
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Posted 03 May 2012 - 11:39 AM

When we go gluten free our antibody levels start to drop. When we ingest even the tiniest amount of gluten it causes the antibodies to flare and the symptoms sometimes are more severe than before we were diagnosed. It is your bodies way of trying to keep you from eating any more gluten.
It sounds like you have some neuro problems associated with gluten. That is not unusual. For me the depression went away gluten free and only returns when I get glutened. That helps me to cope. The knowing that it is the gluten doing it. In my case being gluten free did nothing for the anxiety but for others that resolves also. It does take time though.
Some of us will also go through withdrawl which while it is not pleasant will resolve once we have been gluten free strictly for a while. In my case the withdrawl lasted about 2 weeks. If you 'cheat' on the diet it will continue to feed the withdrawl and it will take longer to feel better so do not cheat and do take all the precautions you need to keep you safe.
Hang in there. It will get better. Honest. Ask any questions you need to and do read the Celiac 101 info.
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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)


celiac 49 years - Misdiagnosed for 45
Blood tested and repeatedly negative
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 with proper diagnosis of Celiac November 2002
Some residual nerve damage remains as of 2006- this has continued to resolve after eliminating soy in 2007

Mother died of celiac related cancer at 56
Twin brother died as a result of autoimmune liver destruction at age 15

Children 2 with Ulcers, GERD, Depression, , 1 with DH, 1 with severe growth stunting (male adult 5 feet)both finally diagnosed Celiac through blood testing and 1 with endo 6 months after Mom


Positive to Soy and Casien also Aug 2007

Gluten Sensitivity 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)

#6 MitziG

 
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Posted 03 May 2012 - 12:43 PM

Relax. You sound very normal. For a Celiac anyway. While a few people get relief within days, for most it takes months, and for a few unfortunate ones, years, to heal. Reacting stronger now than you did just a few weeks ago is very normal as well, and it is actually a good sign. Your body is fighting back now- important step in healing. The next few months will probably be rough, a lot of setbacks. Again-normal. But most likely, 6 or 7 months from now, you will realize you are feeling better...and it just keeps getting better! You didn't fall apart overnight, and you won't heal overnight either. Depression and anxiety go hand in hand with gluten, and you will discover an occasional accidental glutening can make it worse for several weeks. Give yourself permission to feel lousy for awhile. You are doing all the right things! Continue with your meds and therapy for now (but make sure meds are gluten-free!) Chances are good that you won't need them forever!
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#7 jnh380

 
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Posted 03 May 2012 - 01:08 PM

Relax. You sound very normal. For a Celiac anyway. While a few people get relief within days, for most it takes months, and for a few unfortunate ones, years, to heal. Reacting stronger now than you did just a few weeks ago is very normal as well, and it is actually a good sign. Your body is fighting back now- important step in healing. The next few months will probably be rough, a lot of setbacks. Again-normal. But most likely, 6 or 7 months from now, you will realize you are feeling better...and it just keeps getting better! You didn't fall apart overnight, and you won't heal overnight either. Depression and anxiety go hand in hand with gluten, and you will discover an occasional accidental glutening can make it worse for several weeks. Give yourself permission to feel lousy for awhile. You are doing all the right things! Continue with your meds and therapy for now (but make sure meds are gluten-free!) Chances are good that you won't need them forever!


Thank you mitzi, that is what I needed to hear. I just have such high standards for myself that when I feel unable to cope it makes me feel even worse. Like i am letting myself and others down by not being 100%. I need to allow myself to feel bad and be selfish so that I can get better in the long run. It's hard to be realistic in the middle of the worst feelings i have ever had in my life.
will keep my head up and perservere,
justin
  • 0
TTG positive, Biopsy positive, April '12
Elevated ALT, Bilirubin, low Vitamin D
Peripheral neuropathy, GI issues, joint pain

#8 lucky28

 
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Posted 03 May 2012 - 05:30 PM

I'm sorry you are feeling so stressed. before diagnosis my anxiety ran pretty high. my doctors kept trying to give me antidepressants and anxiety meds. when I went gluten-free last august I was more focused on my gi issues so I didn't pay attn to my anxiety level. but I do notice the difference now. I don't jump out of bed @ full steam with my mind racing, worrying. I am much more relaxed and confident in my personal and professional life. A fw ppl have even noticed and commented on it. I think it might be one of the slower resolving issues that resolves with being gluten-free. just stay viligant about being gluten-free(lots of great advice all around this forum) and give your body time to heal, you'll get there.
  • 0
"They're my villi, and I need them NOW!"


Positive Biopsy- 08/11
Slightly positive tTG only- 06/11
Negative blood panel- 11/05
Diagnosed with IBS- 1981

#9 beachbirdie

 
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Posted 06 May 2012 - 08:24 AM

Hi everyone,
I woke up this morning with a terrible stomachache and wanted to cry. I still want to cry. I just don't know anymore what is going on. I was given a diagnosis of celiac after a positive blood test and positive biopsy a few days ago. I have been on a gluten free diet for about 2 weeks.
I just don't know if this is the answer for my troubles. I have extremely high & chronic anxiety that takes over my whole life and it is hard to see clearly what is going on. I hope with all my might that the reason I feel this way is the celiac, and not some other horrible disease, tumor, or psychological problem. If I look back and analyze the last few years I start to wonder when it all started. I remember 2 years ago I spilled hot oil onto my hand and the burn mark took more than a year to heal completely. 18 months ago I started having tingling/numb hands, which I went to PT for and helped a little. about a year ago I fell into a major depression and have been unable to get out of it. I have done everything in my power to fight my depression. I am seeing a therapist, on antidepressants, and have been working on all the social and relationship issues I can possibly think of, and yet I still wake up with symptoms of anxiety that I can say are similar to the celiac symptoms. nausea, aches, gas, flatulance, etc.
I am just so scared and overwhelmed. I am putting myself through hell and right now I can't tell if anything is making a difference. I don't know how to find all the hidden gluten. Have I been missing some all along and my diet has done nothing to help me heal? How can I find the willpower to focus on my diet? What if I dont improve? Can anyone else relate to my experience and let me know it will be ok? I just need some guidance as I dont really have much contact with the doctors who have diagnosed me.
Just feeling blue...


Have you been checked out for other issues? Diabetes and thyroid can cause delayed wound healing.

However, as so many others have said, your body is going through a LOT as it heals from old damage and adjusts to your new diet. You probably were ill for quite some time, and it will take time to heal! Hang in there, and hang out here! This is such a lovely bunch of supportive people who have experienced many trials in healing! {{hugs!}}
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1999 - Hypothyroid
2003 - Hashimoto's Disease
2008 - Diverticulitis
2009 - Significant Vit D Deficiency
2011 - Diverticulitis again
2011 - HLA-DQ2.2
2012 - TtG IgG positive... I am now, finally, Gluten Free - 5/16/2012

#10 jnh38

 
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Posted 06 May 2012 - 07:34 PM

Thanks everyone. I have an appointment with a dietitian on friday. I wrote this post last thursday after feeling like I took a major step backwards. Things improved a whole bunch on friday and I felt good. It just shows that it is quite an up and down thing while my body heals. All I can link it to was a glass of whisky i had the night before. I have read that distilled spirits do not contain gluten, however that was the second time I had a glass and the next day felt bad. just going to have to stay away until I am healed and then I can slowly test it.
I have decided to really own this condition and do what I have to do, such as really pay attention to the food I eat, and not only that, change the way I think about food. Its a new day. My psychological issues seem to be getting a bit better too. I cant wait to see how I feel in 6 months!
Thanks for the support. I am sure there will be more times when I feel bad and will call on it again.
Justin
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#11 psawyer

 
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Posted 06 May 2012 - 07:55 PM

Justin, if you are early in the healing process, your damaged gut could react to just about anything. Do not assume that anything necessarily has gluten just because you have a bad time after consuming it.
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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

#12 pricklypear1971

 
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Posted 06 May 2012 - 09:56 PM

Thanks everyone. I have an appointment with a dietitian on friday. I wrote this post last thursday after feeling like I took a major step backwards. Things improved a whole bunch on friday and I felt good. It just shows that it is quite an up and down thing while my body heals. All I can link it to was a glass of whisky i had the night before. I have read that distilled spirits do not contain gluten, however that was the second time I had a glass and the next day felt bad. just going to have to stay away until I am healed and then I can slowly test it.
I have decided to really own this condition and do what I have to do, such as really pay attention to the food I eat, and not only that, change the way I think about food. Its a new day. My psychological issues seem to be getting a bit better too. I cant wait to see how I feel in 6 months!
Thanks for the support. I am sure there will be more times when I feel bad and will call on it again.
Justin


Quite a few of us react differently/badly to alcohol once off gluten. I won't bore you with my wine tasting story - but lets just say its been 6 months and I still threaten to gut hubs of he drinks montepulciano in my presence.

It does get better.
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Apparently there is nothing that cannot happen today. ~ Mark Twain

Probable Endometriosis, in remission from childbirth since 2002.
Hashimoto's DX 2005.
Gluten-Free since 6/2011.
DH (and therefore Celiac) dx from ND
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Responsive to iodine withdrawal for DH (see quote, above).

Genetic tests reveal half DQ2, half DQ8 - I'm a weird bird!

#13 WendyK

 
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Posted 08 May 2012 - 10:27 AM

I went to a nutritionist and it really was the best thing I could have done. I felt so bad for years. I'm not a celiac but I am gluten sensitive, along with diary and many other items. The saying, you are what you eat, really hits home once you get tested. The hardest part in the early stages is actually believing these major changes (including many supplements for me) are worth it. Realistically, you just don't know. You have to live it. In order to do that you have to be patient with yourself and let time pass. It took me two months of a very strict diet before I noticed any change which was pretty discouraging but I put my faith in my Doctor of Nutrition (clearly she know more than I do). She is my best resource now. Once my symptoms really started to deminish (but still there) and my energy started coming back, it really felt like a meracle. It's been almost eight months now and I still feel like I am in a recovery stage but a great stage. I feel happy and energized now but it's still a real commitment. I hope some day to cut back on the supplements since there are so many and expensive but worth it for now. I believe I am actually getting my nutrients now more than I have in years. When I was first told to do the diet change, I gave myself a break instead of powering through the day. Raising two kids on my own and dealing with such a different life style is tough. They didn't want to change (nor should they have to) but when I was tired, I just told them I needed to rest instead of not letting them know I was exhausted. I know longer felt guilty when I felt weak and gave my body more rest to help itself recover. Be patient with yourself and don't expect to feel better over night. Be sure your Doctor has run a blood test on most routine type items. It's amazing they don't do a routine panel anymore. My hypothyrodism would have been discovered years before also.
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#14 jnh380

 
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Posted 02 June 2012 - 01:38 PM

Hi guys, its been about a month since I posted this topic. My experience since than has been a lot of ups and downs. Today is a bad day and I needed to share. I have had many good days this last month and have been trying really hard to watch my food. I have found that dairy is really bad for me right now, but have caved in a few times and had some ice cream or milk in coffee.
I get so discouraged when I have a bad day, and I forget how good I have felt on the good days. in fact just yesterday was a great day. Had a confidence breakthrough at work. Woke up this morning feeling terrible and have been depressed the whole day. I just feel sometimes like I am broken. Like this will never get better. for 2 years now I have associated bad thoughts with ill feelings and it is so easy to continue that behavior. The brain-gut connection is so strong and i feel like i am at its mercy. if i have a stomachache, it must mean that whatever negative thought is in my head must be true. Do other people feel that way?
  • 0
TTG positive, Biopsy positive, April '12
Elevated ALT, Bilirubin, low Vitamin D
Peripheral neuropathy, GI issues, joint pain

#15 LauraB0927

 
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Posted 02 June 2012 - 06:54 PM

Hi guys, its been about a month since I posted this topic. My experience since than has been a lot of ups and downs. Today is a bad day and I needed to share. I have had many good days this last month and have been trying really hard to watch my food. I have found that dairy is really bad for me right now, but have caved in a few times and had some ice cream or milk in coffee.
I get so discouraged when I have a bad day, and I forget how good I have felt on the good days. in fact just yesterday was a great day. Had a confidence breakthrough at work. Woke up this morning feeling terrible and have been depressed the whole day. I just feel sometimes like I am broken. Like this will never get better. for 2 years now I have associated bad thoughts with ill feelings and it is so easy to continue that behavior. The brain-gut connection is so strong and i feel like i am at its mercy. if i have a stomachache, it must mean that whatever negative thought is in my head must be true. Do other people feel that way?


I feel what you're going through - ironically I'm a mental health therapist 9am-5pm and now a Celiac 24/7...yes, the brain/gut connection is VERY strong and many people with anxiety report physical symptoms, specifically GI type things. Its easy to make the connection and get confused. Speaking for myself, through the whole withdrawal process I was experiencing some anxiety and mild depression symptoms and I decided to focus my energy on a positive thing. I've been going to the gym 4 days a week to exercise and hopefully work off the weight that the Celiac put on me over the past couple of years. So far I've lost 7 pounds - I feel great now and can focus my anxiety and energy in a positive way. Is there anything like that you can get involved in?
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"Dark and difficult times lie ahead ahead - soon we must all face the choice, to do what is right, or what is easy..." - Albus Dumbledore (Harry Potter)

Diagnosed Celiac in May 2012 by TTG level and endoscopy
Acid reflux/GERD (stopped since eating gluten-free)
Syncope
Raynaud's Syndrome
Iron Deficient




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