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T.H.

Very, Very Down Today

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This is, honestly, just going to be a big ole vent. I don't want to whine to my family - they have enough worries right now to deal with. I suppose I just need to let it all out to people who have been there! I'm feeling so DOWN today. :(

August 10 will be my 1 year anniversary of being diagnosed as Celiac positive, and I'm feeling very depressed about where I'm at right now.

When I went gluten free, my body went pretty much haywire within days and I started reacting to foods all over the map. Headaches, joints and muscle aches, feeling like I had the flu. A couple weeks in and my throat would swell up when I ate some of these foods, too. Then it moved on to me reacting when I inhaled some of these foods from steam or dust in the air.

My GI doc said he has a few patients who have reacted like this, and it usually calms down at 6 months-2 years after going gluten free. Nearly at the 12 month mark now, I'm feeling so discouraged about how far I've come.

- I've lost 60 pounds and I'm constantly fighting not to lose any more.

- I have been on a diet of less than 10 foods for nearly the entire year, because I have reacted to everything we try, either right away, or within a few weeks. I can drink water. I can season with salt. I have nothing sour, and sweet potato is at sweet as it gets.

- We have to cook everything from scratch, obviously, and I feel like all my time is thinking of food, researching recipes for food, buying food (we have to go to 3 different stores to get what I can eat), and cooking food. I think about it so much I feel like I don't even remember how to talk about anything else!

- I cannot enter any place that has food without wearing a scarf or paper mask over my mouth and nose: I react to so many foods that I can breathe in, now, that it's really unsafe. If I stay for over an hour in a place that has some of the worst foods, like coffee, then I'll still react, even with a mask on. My throat gets really sore, it will swell if I don't leave as soon as I feel the pain, and then I feel like I've been flattened by a truck the next couple of days.

- I can't travel. At all. Leaving my house and entering another building ALWAYS results in at least a small reaction. If I go out 2-3 days in a row, my reactions start to get worse and worse, like a cascade effect. I literally won't be able to be in the same room as my family when they are simply eating dinner when it gets this bad; I have to lock myself away from the food. Smelling something as simple as rice cooking will make my throat swell up at that point.

It's not that I don't see forward progress, but my healing is so slow it makes me just want to sit down and cry sometimes. I have to go out at least a little, to take the kids to the park, to get groceries, and it feels like even doing that makes me go two steps forward, one step back in trying to get better. Every other place - EVERY place - I have visited has made me react, even if only after a few hours, so how am I supposed to go somewhere over night? I missed the last vacation with the family and my 20 year highschool reunion simply because there was nowhere safe that we could think of that I could stay during the trip.

My doctors say they think the progress is encouraging - at least it IS progress, I'm told. And I know that's true. I know there's been good stuff from this. I no longer have the depression that's plagued me for decades, and I figure if this is happening and I'm not depressed, I can blame that squarely on Celiac Disease, ya know? When I'm not reacting, my joint pain and nerve problems I've had for years also disappear. Mentally, I feel more aware and 'here' than I have in years, too.

I wouldn't trade the mental improvement for any of this - it feels like I found myself when I didn't even know part of me was lost, honestly. But at the same time, I am reminded of a post I read today, when the nice gentleman mentioned not wanting to live in a bubble just because he had celiac disease. I couldn't help thinking: that's what I"m doing. I am absolutely living in a bubble, and it's one I can't even leave, and today that's really hitting home. I'm eating dinner and it's the same meal I had for lunch, and for breakfast, and for all three meals for months now, pretty much. I would almost KILL to be able to taste something sweet, or sour, or for the love of God, simply DIFFERENT today. And I am reacting so much I can't even do a food challenge and see if I can have something new, because it won't be safe for a few days. :(

It's sad when much of my family is asking if perhaps gluten wouldn't be so bad, if all the rest of this went away. And that wouldn't even be an option: gluten right now makes my throat swell up instantly, and I'm sicker than anything else I eat. But when I'm trying to keep my spirits up, and believe that this will get BETTER some day, it's that much harder to have other people telling me that they wished I'd never been diagnosed.

'Cause I really don't wish that. Losing this depression has affected me so much. I just... I guess just today is one of the hard days, you know what I mean? When everything hits you all at once, all the crummy and frustrating and irritating and sad parts of having to cope with food problems. All the isolating effects of not getting to eat out with everyone else, or being able to just stop for a burger somewhere. All of that is just stomping on me right now, big time.

Okay, now that's off my chest. Thanks for listening, guys. I appreciate this community so much - it's been such a big help, especially with the emotional support! And here's wishing all of you are managing to escape your own bubbles as often as possible, eh?


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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This is, honestly, just going to be a big ole vent. I don't want to whine to my family - they have enough worries right now to deal with. I suppose I just need to let it all out to people who have been there! I'm feeling so DOWN today. :(

August 10 will be my 1 year anniversary of being diagnosed as Celiac positive, and I'm feeling very depressed about where I'm at right now.

When I went gluten free, my body went pretty much haywire within days and I started reacting to foods all over the map. Headaches, joints and muscle aches, feeling like I had the flu. A couple weeks in and my throat would swell up when I ate some of these foods, too. Then it moved on to me reacting when I inhaled some of these foods from steam or dust in the air.

My GI doc said he has a few patients who have reacted like this, and it usually calms down at 6 months-2 years after going gluten free. Nearly at the 12 month mark now, I'm feeling so discouraged about how far I've come.

- I've lost 60 pounds and I'm constantly fighting not to lose any more.

- I have been on a diet of less than 10 foods for nearly the entire year, because I have reacted to everything we try, either right away, or within a few weeks. I can drink water. I can season with salt. I have nothing sour, and sweet potato is at sweet as it gets.

- We have to cook everything from scratch, obviously, and I feel like all my time is thinking of food, researching recipes for food, buying food (we have to go to 3 different stores to get what I can eat), and cooking food. I think about it so much I feel like I don't even remember how to talk about anything else!

- I cannot enter any place that has food without wearing a scarf or paper mask over my mouth and nose: I react to so many foods that I can breathe in, now, that it's really unsafe. If I stay for over an hour in a place that has some of the worst foods, like coffee, then I'll still react, even with a mask on. My throat gets really sore, it will swell if I don't leave as soon as I feel the pain, and then I feel like I've been flattened by a truck the next couple of days.

- I can't travel. At all. Leaving my house and entering another building ALWAYS results in at least a small reaction. If I go out 2-3 days in a row, my reactions start to get worse and worse, like a cascade effect. I literally won't be able to be in the same room as my family when they are simply eating dinner when it gets this bad; I have to lock myself away from the food. Smelling something as simple as rice cooking will make my throat swell up at that point.

It's not that I don't see forward progress, but my healing is so slow it makes me just want to sit down and cry sometimes. I have to go out at least a little, to take the kids to the park, to get groceries, and it feels like even doing that makes me go two steps forward, one step back in trying to get better. Every other place - EVERY place - I have visited has made me react, even if only after a few hours, so how am I supposed to go somewhere over night? I missed the last vacation with the family and my 20 year highschool reunion simply because there was nowhere safe that we could think of that I could stay during the trip.

My doctors say they think the progress is encouraging - at least it IS progress, I'm told. And I know that's true. I know there's been good stuff from this. I no longer have the depression that's plagued me for decades, and I figure if this is happening and I'm not depressed, I can blame that squarely on Celiac Disease, ya know? When I'm not reacting, my joint pain and nerve problems I've had for years also disappear. Mentally, I feel more aware and 'here' than I have in years, too.

I wouldn't trade the mental improvement for any of this - it feels like I found myself when I didn't even know part of me was lost, honestly. But at the same time, I am reminded of a post I read today, when the nice gentleman mentioned not wanting to live in a bubble just because he had celiac disease. I couldn't help thinking: that's what I"m doing. I am absolutely living in a bubble, and it's one I can't even leave, and today that's really hitting home. I'm eating dinner and it's the same meal I had for lunch, and for breakfast, and for all three meals for months now, pretty much. I would almost KILL to be able to taste something sweet, or sour, or for the love of God, simply DIFFERENT today. And I am reacting so much I can't even do a food challenge and see if I can have something new, because it won't be safe for a few days. :(

It's sad when much of my family is asking if perhaps gluten wouldn't be so bad, if all the rest of this went away. And that wouldn't even be an option: gluten right now makes my throat swell up instantly, and I'm sicker than anything else I eat. But when I'm trying to keep my spirits up, and believe that this will get BETTER some day, it's that much harder to have other people telling me that they wished I'd never been diagnosed.

'Cause I really don't wish that. Losing this depression has affected me so much. I just... I guess just today is one of the hard days, you know what I mean? When everything hits you all at once, all the crummy and frustrating and irritating and sad parts of having to cope with food problems. All the isolating effects of not getting to eat out with everyone else, or being able to just stop for a burger somewhere. All of that is just stomping on me right now, big time.

Okay, now that's off my chest. Thanks for listening, guys. I appreciate this community so much - it's been such a big help, especially with the emotional support! And here's wishing all of you are managing to escape your own bubbles as often as possible, eh?

I am so sorry you are feeling so down today, Shauna. :( And I do understand. Vent away!

It is tempting sometimes to look back to the good (bad) ole days when we were blissfully (or not so blissfullly) killing ourselves with gluten and see them as not so bad after all, because usually the only bubble we were living in was one that was chained to a toilet :unsure: And often we have to get worse before we get better, which makes it that much harder to stay the course. Speaking for myself, I have found so many other things than gluten that I have had to deal with too, that they all make the gluten seem relatively minor. But we just have to rejoice in the small improvements and have faith that the rewards will come. It is bad, though, that others state they wish you had never been diagnosed :(

I am 2-1/2 years into this, and have not found another intolerance in three months now :o so maybe that was the last one :D:rolleyes: I will have to deal with. I am fortunate in being basically an optimistic person, so have only felt the depresssion when my RA got so bad and there seemed to be no medication other than Tylenol to take any longer. But then I was able to use my U.S. medicare to get Humira prescribed (it is not subsidised for me under New Zealand's healthcare system and would have cost me $25,000 a year) and that has turned my life around. I no longer have the crippling pain and my joints move freely again and that improved my outlook immensely.

Yes, I have to say eating out is one of my major losses. I have so many intolerances it is almost impossible for a restaurant to accommodate them. We eat out three or four times a year at most.

I too have to live in a bubble of my own, though. I cannot be in the sun. I spend most of my life indoors. I have had melanoma and other skin cancers, and every sunscreen that I use creates some kind of weird reaction between the sun, the sunscreen ingredients and my skin. Today just half an hour in the car caused en enormous breakout on my hands and arms.

I am not saying this as a vent or seeking sympathy, but many of us do carry other burdens (some so silently you will never hear about them). You are not alone. We are all in this big ole mess together, struggling to make our way day by day. It will get better, but it may take a while. There will be breakthroughs for you, you will heal - maybe not completely, but you will feel far better than you do today. Steady as she goes, Mr. Midshipman, ride out the storm and sail into calmer seas.


Neroli

"Everything that can be counted does not necessarily count; everything that counts cannot necessarily be counted." - Albert Einstein

"Life is not weathering the storm; it is learning to dance in the rain"

"Whatever the question, the answer is always chocolate." Nigella Lawson

------------

Caffeine free 1973

Lactose free 1990

(Mis)diagnosed IBS, fibromyalgia '80's and '90's

Diagnosed psoriatic arthritis 2004

Self-diagnosed gluten intolerant, gluten-free Nov. 2007

Soy free March 2008

Nightshade free Feb 2009

Citric acid free June 2009

Potato starch free July 2009

(Totally) corn free Nov. 2009

Legume free March 2010

Now tolerant of lactose

Celiac.com - Celiac Disease Board Moderator

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Thank you so much for your reply. I really needed the good thoughts today! And it is wonderful to hear that you have not reacted in a few months, too! I usually get through my day with the belief that this is getting better, and sometimes reminding myself of how much I have. I can walk and dance when I wish, I can write, I have my vision and my hearing. I have the money to afford food to BUY, so that even if it's limited, I can still eat until I'm full. Those are things that mean a heck of a lot to me, and sometimes I think it helps to remember to the good things, definitely.

And it really does help, not feeling so alone going through this. Thank you very, very much for sharing what your experience has been. And you are not alone on the sunblock. A very good friend of mine has a husband who has something like that. They don't know what it is, but he simply cannot use sunblock of any kind with horrific rashes, but only if he uses it and goes out in the sun! He has always worked a night shift as a result. They just had a baby a year ago, and it looks like the little one has the same condition, they just wish they knew what it was.

And after I wrote this, I was given a little reminder that it might be that time of month again. Am wondering if that is why today is such a terrible day. :lol:

I am so sorry you are feeling so down today, Shauna. :( And I do understand. Vent away!

It is tempting sometimes to look back to the good (bad) ole days when we were blissfully (or not so blissfullly) killing ourselves with gluten and see them as not so bad after all, because usually the only bubble we were living in was one that was chained to a toilet :unsure: And often we have to get worse before we get better, which makes it that much harder to stay the course. Speaking for myself, I have found so many other things than gluten that I have had to deal with too, that they all make the gluten seem relatively minor. But we just have to rejoice in the small improvements and have faith that the rewards will come. It is bad, though, that others state they wish you had never been diagnosed :(

I am 2-1/2 years into this, and have not found another intolerance in three months now :o so maybe that was the last one :D:rolleyes: I will have to deal with. I am fortunate in being basically an optimistic person, so have only felt the depresssion when my RA got so bad and there seemed to be no medication other than Tylenol to take any longer. But then I was able to use my U.S. medicare to get Humira prescribed (it is not subsidised for me under New Zealand's healthcare system and would have cost me $25,000 a year) and that has turned my life around. I no longer have the crippling pain and my joints move freely again and that improved my outlook immensely.

Yes, I have to say eating out is one of my major losses. I have so many intolerances it is almost impossible for a restaurant to accommodate them. We eat out three or four times a year at most.

I too have to live in a bubble of my own, though. I cannot be in the sun. I spend most of my life indoors. I have had melanoma and other skin cancers, and every sunscreen that I use creates some kind of weird reaction between the sun, the sunscreen ingredients and my skin. Today just half an hour in the car caused en enormous breakout on my hands and arms.

I am not saying this as a vent or seeking sympathy, but many of us do carry other burdens (some so silently you will never hear about them). You are not alone. We are all in this big ole mess together, struggling to make our way day by day. It will get better, but it may take a while. There will be breakthroughs for you, you will heal - maybe not completely, but you will feel far better than you do today. Steady as she goes, Mr. Midshipman, ride out the storm and sail into calmer seas.


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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Have you been tested for fructose malabsorption and SIBO?


40 year old former foodie on a quest to feel better!

-IgE to oats and rye

-Diagnosed with
Colitis
via endoscopy/colonoscopy Oct '10

-Following
FODMAP
diet since June '10, Positve
SIBO
test, July '10

-Diagnosed
non-celiac gluten intolerant
June '10 (celiac in March '10, endocsocopy in Oct '10 shows no signs of celiac)

-
Osteopenia
June '10

-
Gluten free
since July '09 &
Soy free
since December '09

-
Dairy free
since '06

-
IBS & Sjogren's
diagnosed '05

-
RA
diagnosed as a toddler

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Your troubles may not all be caused by gluten. There is a syndrome out there called Multiple Chemical Sensitivity Disorder (MCS). Nobody knows why it happens, but some people just gradually become sensitive to all sorts of things and it begins to really affect the way they live their lives. There is a woman who wrote a book about this and she has a blog too. I haven't read her book, and I'm not sure if she's gluten-free, but she developed sensitivities to just about everything out there. Her name is: Anne Lipscomb http://annelipscomb.com/ and I think she's on the west coast somewhere. She focuses more on pollutants in the air and environment. If you google MCS, you might come across more blogs written by people who are dealing with food issues.

I've got tons of food issues myself. I only eat what I myself have cooked from scratch. And now, I'm in the process of trying to buy some land so I can pretty much grow everything I eat. My life revolves around whole healthy food now, so I have made it my life's work.

Is it easy??? No. Is it exhausting? Yes. Is it rewarding? Yes. Does it ever become second nature? Yes!

Does it make the bad days all go away? No. But that's when I pull out my Dilbert comics, and Calvin & Hobbes and some old Erma Bombeck books (can't recommend those enough) and laugh the blues away.

Hope that helps at least a smidge.

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SIBO I've been tested for and came back negative, thankfully.

For the fructose malabsorption, I haven't been tested, but my GI said he'd be happy to do it. However, he's noticed that the test does better if his patients go on the diet first, then get tested second. He said he's seen a lot of false negatives, and positives, if he tests when people are still having gut issues. So he was going to wait until my gut improved before testing. Unfortunately, we don't think that's an issue (I'd love to have an answer!), because my reactions don't seem to track along the 'bad' and 'good' foods on the low fructose or low FODMAP diets

Thank you so much for mentioning both, though! Appreciate the thought. :)


T.H.

Gluten free since August 10, 2009.
21 years with undiagnosed Celiac Disease

23 years with undiagnosed sulfite sensitivity

25 years with undiagnosed mast cell activation disorder (MCAD) 

 

Daughter: celiac and MCAD positive

Son: gluten intolerant
Father, brother: celiac positive

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