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Are We There Yet?


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#1 WendyLee

 
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Posted 29 March 2012 - 06:07 PM

I am newly diagnosed Coeliac by blood work and an Endoscopy. No known history in the family. I have always been a 'well' person. Would go to the Doctor only twice a year for my HRT script.

At the end of the year I turned 60 it all started. I neglected to go to the physio for a sore shoulder and ended up, all through 2008 with an extremely painful Frozen Shoulder (Adhesive Encapulitis). That same year my lovely father-in-law died with bowel cancer he had neglected to tell us about and our youngest dau's marriage was in severe meltdown.

We have two girls, both living over 2000klm away in Queensland. At that time both were married to soldiers based up there who were doing deployments to Afghanistan.
By Christmas Eve 2008 I went into a nosedive with major anxiety I believe brought on by the extreme pain and stress of the last year. Was prescribed Citalopram and after about 10 days of adjustment, it kicked in and was my new best friend until Nov 2010. When I had a very big 'blip' and crashed. I came back up again and thought nothing more of it.

We had had another horrific year with the eldest dau. Youngest dau's marriage was in healing mode and that was good but eldest's husband got to Afganistan on his 5th deployment and decided he didn't want to be married anymore to his wife of 18 years, he wanted the younger girl in Admin and so started a campaign of terror when he came home. I was up north helping her to pack up house and move. She has two boys. Just a note here that even after all this time he is still terrorizing her.

The 'blip' in my antidepressant treatment at the end of Nov 2010 happened on a weekend when ex son in law took the youngest boy of 4 years for a 3 hour visit and didn't bring him back. We had no idea where they were. The custody papers that my dau thought were all in order, weren't, he had never signed them so the Police were powerless. Eventually after 3 days he bought his son back to my other dau's place. But the damage had been done. Post Traumatic Stress was burnt into all of us.

What has all this to do with my coeliac problem, most of it I believe. All the stress "turned it on".
I flew up to Queensland in May of 2011 for 2 months to help. Had a couple more 'blips' but then when I came home, I had a slight one on Friday night 6th Aug watching telly and I have been sick ever since.

My former doctor of 10 years kept upping my Citalopram until I couldn't function. I was feeling 'unwell', fatigued all the time. Off my food. Another doctor in the same practice kept changing me from one AD to another until a couple of months back I changed to a Doctor who practices Integrated Medicine. He listened quietly to my story and straight off order the blood work for Coeliac....had the biopsy 2 weeks ago and here I am.
The only symptoms I have had is chronic fatigue and just not feeling well. The bloods showed a deficiency in Vit D but my iron and essentials are normal.

Gliadin IgA - 86 (< 20); Gliadin IgG - 100 (< 20); Transglutaminase IgA Ab - 27 (< 4); Biopsy has shown a shortening and flattening of the villi.

I've started the GFD as of Saturday 17th March 2012. That is written in red in my diary :P:)

I've had a wretched 2 weeks. I began taking another AD some months ago before I knew about the celiac disease, it's called Mirtazapine. Now I was unsure if it wasn't being totally nice to me. Mirt. can have a side effect of making you anxious (go figure)....I didn't know which symptoms were celiac disease or the drug so last week (with doc's approval I decided to cross fade from Mirt. to Citalopram because I knew what to expect from the Cit. BIG mistake, only started Cit. on 10mg and I was SO sick for 4 days that I stopped it. Now I'm not on anything.

I hate the mornings, mainly. I wake with my stomach filled with ferrets all running about and hot and sweating. I usually cry (big sook). Work up the courage to have breakfast. Use to have a cuppa tea first up but find that makes me worse. As the day goes on I can feel a tad better but I'm usually a bundle of misery.
Yesterday I took an Ativan 1mg that I just happened to have and within 45 minutes I felt a calm wave over me and for the rest of the day I could actually function. I've taken another one at 10 am this morning because I have an acupuncture appt. at 2pm and I think I really need it (the acupuncture that is). Still had a weep sitting in the sun.

My so lovely husband says I'm being too hard on myself and I should go back onto the Mirtazapine if it will help.......I JUST DON'T KNOW ANY MORE! I don't know what to expect.

The glossy Coeliac mags are all full of bright ppl having great lives, traveling the world and recipes, but what was their life like before the GFD kicked in......and I can barely face food.
I don't pretend that the diagnoses was a blessing, I am a person who has not been seriously ill in her life, never had an operation, never broken anything and now, not only do I feel so wretched, my freedom of choice for the rest of my life has gone and I have to get use to it, no fish n chips from the corner shop, no Smarties at the kid's parties. I know there's substitutes but it's not the same. I will get use to it but at the moment it sucks.

I've been put on a Health Care Plan of dieticians, bone density tests, follow ups etc so that's all good but it's the day to day grind of getting from one day to the next. I just Praise The Lord I don't work and my husband is a caring and capable man.

And so endeth my testimonial. I apologies for the length and if I've put it in the wrong spot, so sorry. You are all great folk out there.

Wendy Lavender - Australia
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Doctor diagnosis 8 Feb 2012
Specialist diagnosis 5 March 2012
Started GFD 17 March 2012 after Endoscopy
Blood work & Endoscopy

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#2 pricklypear1971

 
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Posted 29 March 2012 - 06:38 PM

First, I'm sorry to hear about your family troubles. I hope it settles soon for the sake of all.

Second, I don't know a thing about antidepressants and how they affect your body going into the gluten-free diet.

Third, if Smarties are the little round candies made of sugar and coloring they are completely gluten-free and have as many as you want.

Most people go through a period of withdrawal. Yours may be worse than normal and is causing some of your depression issues. Also, many of us are unsure about what to eat and have very incomplete diets in the beginning. You need to eat healthy, whole foods as much as possible.

I hope others chime in here, since I'm out of my depth regarding your meds and dealing with depression and Celiac.
  • 0
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
.
Responsive to iodine withdrawal for DH (see quote, above).

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

#3 mushroom

 
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Posted 29 March 2012 - 06:38 PM

Oh my, I am so sorry you are having such a tough time of it, Wendy :( But things eventually do get better. Believe it or not, some of the way you are feeling could be a withdrawal from gluten, as it acts as an opioid in the body and withdrawing from it is similar to the withdrawal from nicotine or other addictive substances. Hang in there until you get over the hump. Be kind to yourself, and I am glad you have a kind and caring husband. I hope your daughter has all her custody issues in order and you can start relaxing a bit on that score. These things are all very distressing. And grams to the rescue on her white steed :P

You may find as you get further into the diet that your depression (which is probably attributable to celiac) will lessen, and you may need less and less of the medication. I hope you are supplementing with plenty of Vit.D and that your bone scan turns out well.

Are you making sure that all your medications are gluten free? Including all your OTC supplements, all your toiletries and personal care products. You will also need to decontaminate your kitchen, get yourself a new toaster for gluten free only, new colander/strainer, new wooden/plastic cutting boards and utensils, new non-stick frypan (the old one is probably scratched and gluten can contaminate your food). You will also have to train your husband to clean up all his gluten crumbs, assign him an area of the counter than can have gluten on it, and try to get him to agree to eat gluten-free at home if he will go along with it. It will make your life a lot easier. :) You will need to go through your pantry and fridge and have a total reorganization, either getting rid of the gluten or putting it in places where it cannot contaminate your food. You will need your own containers of butter, jam, peanut butter, and have a rule that anything shared is to be taken out with a clean spoon.

Do keep us informed of how you are progressing and ask any questions that pop up. If you google around the forum, put your feet up and do some reading, you will find a lot of interesting information. :)
  • 0
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#4 Darn210

 
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Posted 29 March 2012 - 06:57 PM

Welcome to the board Wendy. It will get better!!!

My former doctor of 10 years kept upping my Citalopram until I couldn't function. I was feeling 'unwell', fatigued all the time. Off my food. Another doctor in the same practice kept changing me from one AD to another until a couple of months back I changed to a Doctor who practices Integrated Medicine.


When the intestines are damaged, not only are you not absorbing all your nutrients, you also aren't absorbing all your medication. As you start to heal, you may find that you don't need as much AD medication since you are now absorbing it properly. You may not need it at all as depression can be a Celiac symptom, but time will tell on that one.

In the beginning, the diet can sound overwhelming, but you'll be surprised how quickly you adjust. Get yourself a few safe meals (for us it was tacos, (rice) pasta dishes, grilled meat & veggies) and then build and experiment from there.

So that you don't feel deprived, a good place to start is your favorite comfort food. What do you like? We can help you convert it to gluten free . . . we've got a lot of experience on this board converting recipes.


Third, if Smarties are the little round candies made of sugar and coloring they are completely gluten-free and have as many as you want.


What we call Smarties in the US are gluten free. I know that in at least one other country (was it Canada?) they are not. You need to check the ingredients of Smarties in Australia.
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#5 butterfl8

 
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Posted 29 March 2012 - 07:15 PM

http://www.celiac.co...t-and-its-gone/

I know sometimes with depression it's hard to get out of the pit. Here are some of our more hopeful stories. Your story is amazing. All of that trama, stress, and pain, but now you have a way to feel better! I'm not trying to trivialize your pain, just to give you some hope. This diagnosis may be just what you need to feel amazing.
Give the diet some time. If YOU feel that you needs meds to help you over the rough patch, then by all means find something helpful. But know that after a while, you may not need them. Get yourself on a diet with NO gluten, including your toiletries. We're all here to help--you can feel better.
-Daisy
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#6 Victoria6102

 
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Posted 29 March 2012 - 07:16 PM

In America, Smarties are powdery sugary colored candies. In Canada, Smarties are chocolate candies similar to our M &ms. And that kind, the Smarties like the ones in Canada, are not gluten free. What we call smarties, they call rockets.
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#7 pricklypear1971

 
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Posted 29 March 2012 - 07:26 PM

Sorry to cause all the confusion. These are the smarties I was talking about.

http://www.smarties.com/allergen/
  • 0
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
.
Responsive to iodine withdrawal for DH (see quote, above).

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

#8 Takala

 
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Posted 29 March 2012 - 09:26 PM

Celiac causes malnutrition, which then affects hormones and moods - anti depressants also will effect gut function, because the bulk of the body's serotonin is in the gut, not the brain, and your gut being in an uproar from the effect of the anti depressants will further effect your mood.

You are going into the autumn season down there, so your days are getting shorter, while ours are getting longer here in North America, and this also has an effect on mood for some people.

The classical ways of getting a grip on depression are to make yourself exercise whether you feel like it or not, every day, even if it is for just a short period, and to take a multivitamin, a B vitamin complex, and some mineral supplements, and to "eat well." If you cannot bear the thought of getting outside, I recommend getting a pet that will insist you go outside with it several times a day, or it jumps on you.

Some of us were so sick before being diagnosed or figuring this out (be thankful you at least live in a civilized country with healthcare instead of hit and miss) that we are grateful and see it as a method of regaining some control over our lives, instead of the feeling of losing it.



The glossy Coeliac mags are all full of bright ppl having great lives, travelling the world and recipes, but what was their life like before the GFD kicked in......and I can barely face food.


Yeah, and most of them are younger than you and I, aren't they ? <_< :huh: It's like People magazine is full of celebrity women who just had a baby 6 weeks ago, and they're now back to being a size 4 and jet setting off to exotic locales, photographed in bikinis, with the nannies tending the children after completing their latest business project. B) And they're never sleep deprived. It's idealized, but it's not quite reality.
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#9 WendyLee

 
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Posted 29 March 2012 - 10:01 PM

First, I'm sorry to hear about your family troubles. I hope it settles soon for the sake of all.

Second, I don't know a thing about antidepressants and how they affect your body going into the gluten-free diet.

Third, if Smarties are the little round candies made of sugar and coloring they are completely gluten-free and have as many as you want.

Most people go through a period of withdrawal. Yours may be worse than normal and is causing some of your depression issues. Also, many of us are unsure about what to eat and have very incomplete diets in the beginning. You need to eat healthy, whole foods as much as possible.

I hope others chime in here, since I'm out of my depth regarding your meds and dealing with depression and Celiac.


Phew :rolleyes: so pleased Smarties are gluten free. I was told that there was gluten in the covering of them. Thank you for your support. In a ideal world I'd be eating how I usually eat with a full apetite with lots of good food but at the moment meal times are a pain. My husband has suffered Chronic Fatigue Syndrome for years so we have already been around the labels with that one but I never thought I'd be just as ill as he is. I was suppose to stay the healthy one.
Cheers
Wendy
  • 0
Doctor diagnosis 8 Feb 2012
Specialist diagnosis 5 March 2012
Started GFD 17 March 2012 after Endoscopy
Blood work & Endoscopy

#10 WendyLee

 
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Posted 29 March 2012 - 10:14 PM

Oh my, I am so sorry you are having such a tough time of it, Wendy :( But things eventually do get better. Believe it or not, some of the way you are feeling could be a withdrawal from gluten, as it acts as an opioid in the body and withdrawing from it is similar to the withdrawal from nicotine or other addictive substances. Hang in there until you get over the hump. Be kind to yourself, and I am glad you have a kind and caring husband. I hope your daughter has all her custody issues in order and you can start relaxing a bit on that score. These things are all very distressing. And grams to the rescue on her white steed :P

You may find as you get further into the diet that your depression (which is probably attributable to celiac) will lessen, and you may need less and less of the medication. I hope you are supplementing with plenty of Vit.D and that your bone scan turns out well.

Are you making sure that all your medications are gluten free? Including all your OTC supplements, all your toiletries and personal care products. You will also need to decontaminate your kitchen, get yourself a new toaster for gluten free only, new colander/strainer, new wooden/plastic cutting boards and utensils, new non-stick frypan (the old one is probably scratched and gluten can contaminate your food). You will also have to train your husband to clean up all his gluten crumbs, assign him an area of the counter than can have gluten on it, and try to get him to agree to eat gluten-free at home if he will go along with it. It will make your life a lot easier. :) You will need to go through your pantry and fridge and have a total reorganization, either getting rid of the gluten or putting it in places where it cannot contaminate your food. You will need your own containers of butter, jam, peanut butter, and have a rule that anything shared is to be taken out with a clean spoon.

Do keep us informed of how you are progressing and ask any questions that pop up. If you google around the forum, put your feet up and do some reading, you will find a lot of interesting information. :)


I hadn't though of detoxing from the gluten. I had talked about 'grief' with the counselor but 'withdrawal' from gluten makes sense. Thank you for pointing that out.
I've hit the cupboards and now my neighbours have all my gluten stuff, I was amazed at how little there was. I've been toasting under the grill in the range while Husband still uses the toaster, it does a better job of the gluten bread, anyway. Our meals have been very simple as his diet, being CFS, is sparce so it's not such an effort but he will need to clean up his crumbs. My butter is separate and he doesn't eat jams. I have discovered that my favourite Green Tomato Pickles is gluten free and that's a plus. :P
I called the pharmacy to ask about meds and they are all clear.
My Doctor was very vague about me starting back on meds so I guess I stay off them and hope his Esoteric Acupuncture this afternoon will work magic.
Cheers WendyL
  • 0
Doctor diagnosis 8 Feb 2012
Specialist diagnosis 5 March 2012
Started GFD 17 March 2012 after Endoscopy
Blood work & Endoscopy

#11 WendyLee

 
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Posted 29 March 2012 - 10:22 PM

http://www.celiac.com/gluten-free/topic/65914-depression-any-1-w-it-or-had-it-and-its-gone/

I know sometimes with depression it's hard to get out of the pit. Here are some of our more hopeful stories. Your story is amazing. All of that trama, stress, and pain, but now you have a way to feel better! I'm not trying to trivialize your pain, just to give you some hope. This diagnosis may be just what you need to feel amazing.
Give the diet some time. If YOU feel that you needs meds to help you over the rough patch, then by all means find something helpful. But know that after a while, you may not need them. Get yourself on a diet with NO gluten, including your toiletries. We're all here to help--you can feel better.
-Daisy


Thank you for the link, I will read them all.
My children will verify that I like things to happen yesterday :lol: so for me to hurry up and wait and give the diet time is so hard. I have read how patient some ppl are, they have been battling unknown ill health for years before being diagnosed, for me it's only been 8 months so I do see that I am so lucky to be diagnosed so soon.
  • 0
Doctor diagnosis 8 Feb 2012
Specialist diagnosis 5 March 2012
Started GFD 17 March 2012 after Endoscopy
Blood work & Endoscopy

#12 WendyLee

 
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Posted 30 March 2012 - 02:12 AM

Celiac causes malnutrition, which then affects hormones and moods - anti depressants also will effect gut function, because the bulk of the body's serotonin is in the gut, not the brain, and your gut being in an uproar from the effect of the anti depressants will further effect your mood.

You are going into the autumn season down there, so your days are getting shorter, while ours are getting longer here in North America, and this also has an effect on mood for some people.

The classical ways of getting a grip on depression are to make yourself exercise whether you feel like it or not, every day, even if it is for just a short period, and to take a multivitamin, a B vitamin complex, and some mineral supplements, and to "eat well." If you cannot bear the thought of getting outside, I recommend getting a pet that will insist you go outside with it several times a day, or it jumps on you.

Some of us were so sick before being diagnosed or figuring this out (be thankful you at least live in a civilized country with healthcare instead of hit and miss) that we are grateful and see it as a method of regaining some control over our lives, instead of the feeling of losing it.




Yeah, and most of them are younger than you and I, aren't they ? <_< :huh: It's like People magazine is full of celebrity women who just had a baby 6 weeks ago, and they're now back to being a size 4 and jet setting off to exotic locales, photographed in bikinis, with the nannies tending the children after completing their latest business project. B) And they're never sleep deprived. It's idealized, but it's not quite reality.


It must of been extremely difficult for ppl with Coeliac, not that long ago, right across the board, Doctors attitudes, ignorance, lack of support, lack of gluten free food. I am most grateful that I have this network, yes, even the glossy mags
Wendy
  • 0
Doctor diagnosis 8 Feb 2012
Specialist diagnosis 5 March 2012
Started GFD 17 March 2012 after Endoscopy
Blood work & Endoscopy

#13 AVR1962

 
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Posted 30 March 2012 - 02:30 AM

Wendy, sorry to hear you have been thru so much. Reading your intro I could see how stress could play a big role leading to your diagnosis. I too have been on that same stress path and I do beleive that is what triggered me as well. What I can assure you about your daughter, which she hopefully realizes now, is that the guy was a crumb in the first place to be able to do what he did and she is better without him. My first husband did the same and while it is hard on the kids because they love both parents, I realize my life was spared from what I would have endured had we stayed together. He had to make it look like my fault and made up all kinds of lies to our kids which was a continual stresser for many years but they are adults now and they ahve to make their choices....it is not easy.

I am 49 and was diagnosed this past Sept. For me it was like waking up in someone else's body and I had no clue what just happened to me.

There a wonderful amoujnt of knowledge here and you will learn more here than you will from docs as this still seems to be way over their heads as far as conprehension and how everything relates. At least that is what I have found.

Be patient with yourself and feel very fotunate that you have the diagnosis. Take one day at a time. I have felt like an old dog trying to learn a new trick and my adult daughters get laughingly frustrated (great girls and very supportive, they both are on gluten-free diets) and tell me all I am doing wrong but I am learning......it's a process.

Annette
  • 0
Yesterday is not ours to recover but today is ours to win or lose!

Miscarriage, Kidney stones, Anemia, Pneumonia, Migraines, Restless leg, Bone fractures, Blurred/Double vision, Extreme fatigue, Bone & Joint Pain, Thyroid nodule, Celiac diagnosed 2011, Spine and leg bone loss, GERD, Vitamin deficiencies, Malabsorbtion, Neuropathy issues, Ataxia, Raynaud's Syndrome. Currently on diet with limited grain and sugar.

#14 pricklypear1971

 
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Posted 30 March 2012 - 05:34 AM

Phew :rolleyes: so pleased Smarties are gluten free. I was told that there was gluten in the covering of them. Thank you for your support. In a ideal world I'd be eating how I usually eat with a full apetite with lots of good food but at the moment meal times are a pain. My husband has suffered Chronic Fatigue Syndrome for years so we have already been around the labels with that one but I never thought I'd be just as ill as he is. I was suppose to stay the healthy one.
Cheers
Wendy


Please make sure we are talking about the same Smartie. This is the one we have in the US and it is gluten-free. http://www.smarties.com/allergen/
  • 0
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
.
Responsive to iodine withdrawal for DH (see quote, above).

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

#15 WendyLee

 
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Posted 30 March 2012 - 03:15 PM

Wendy, sorry to hear you have been thru so much. Reading your intro I could see how stress could play a big role leading to your diagnosis. I too have been on that same stress path and I do beleive that is what triggered me as well. What I can assure you about your daughter, which she hopefully realizes now, is that the guy was a crumb in the first place to be able to do what he did and she is better without him. My first husband did the same and while it is hard on the kids because they love both parents, I realize my life was spared from what I would have endured had we stayed together. He had to make it look like my fault and made up all kinds of lies to our kids which was a continual stresser for many years but they are adults now and they ahve to make their choices....it is not easy.

I am 49 and was diagnosed this past Sept. For me it was like waking up in someone else's body and I had no clue what just happened to me.

There a wonderful amoujnt of knowledge here and you will learn more here than you will from docs as this still seems to be way over their heads as far as conprehension and how everything relates. At least that is what I have found.

Be patient with yourself and feel very fotunate that you have the diagnosis. Take one day at a time. I have felt like an old dog trying to learn a new trick and my adult daughters get laughingly frustrated (great girls and very supportive, they both are on gluten-free diets) and tell me all I am doing wrong but I am learning......it's a process.

Annette

Thx Annette for your encouragement. Yes, as time goes by, eldest realises that some parts of her life are less complicated without the third "child's" ego to cope with.
I think you're right about the Doctors, mine was rather pleased with himself to be able to make the diagnosis and pass me onto other staff members for Health Care Programs but when I tried to ask him about the 'anxiety' which I knew was being triggered by my bowel but could going back on an antidepressant stop that, he was most dismissive and not at all helpful and they get annoyed when we self-administer! :blink:
I have been trying to go back to family history research as a distraction, so here's hoping that will work.
Wendy
  • 0
Doctor diagnosis 8 Feb 2012
Specialist diagnosis 5 March 2012
Started GFD 17 March 2012 after Endoscopy
Blood work & Endoscopy




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