Please help.. Is this recovery??

[KathleenH]

2 minutes ago, glutenkid said:

I had a very similar experience, though I've been sick as long as I can remember (I just never knew -- I thought it's how everyone felt). When I got to college I struggled in my classes a fair amount but chalked it up to depression and personality defects. It wasn't until last semester (I'm a junior at SUNY Geneseo, btw) that symptoms reached a point where I decided something was wrong and that I needed medical attention, and that all the issues of laziness and depression lay above whatever was going on. Unfortunately I had no starting point so the extent of my productivity only went as far as googling "brain fog" over and over and reading about all the conditions it's associated with (quite a lot). Celiac was big on my radar but my blood test came back negative so I kept looking elsewhere. Meanwhile, my grades were suffering and I effectively stopped attending classes because I was too sick to sit there and listen to the professors drone on. It was hurtful because I'm generally a smart, curious and high-energy person but I couldn't muster up the energy to be myself. I stopped socializing because I hated the idea of meeting someone and not being able to show them who I was behind the fatigue. It wasn't until the semester ended and I was home for winter break that I went gluten-free at the behest of a holistic nutritionist (among some other things). I started feeling a bit better, but I had a hard time believing it because I try not to get caught up in alternative medicines, particularly ones that are not only unsubstantiated but straight up controversial, as macrobiotics is. So slowly I reintroduced foods. When I reintroduced gluten I was a week off the diet, and minutes after finishing the meal (burrito with a flour tortilla) I experienced the most unbelievable stomach pain and other unpleasant GI symptoms. Everything but the tortilla were "non-problem foods" so I knew that gluten was the problem and immediately went gluten-free. Since then I've become more sensitive and I have to be really careful about cross-contamination, and I've had to cut out other foods again as well, presumably because my intestines are damaged. So now it's been 3 months, and while I can't say I feel significantly better, my quality of life has improved to such a degree that I know changes are happening. Or at least that's what I tell myself. It's hard not having a diagnosis because I generally have a few good days here and there that get me optimistic, but inevitably I slip back into illness and worry that gluten was never an issue and that all the benefits I've been getting (sociability, wit, more consistent articulation) are from a placebo effect. But my experience seems to line up with  those who are in recovery, so all I can do is wait. If by 6 months I can't look back and say there's been a marked difference, I'll try reintroducing gluten. In fact, I may just try a little when the semester ends. I wish I could have taken 6 months off to really focus on getting better, because while I'm more effective academically this semester, I still can't seem to do as well as I know I could if I were feeling healthy. 

Hey, I hear ya when you say " I still can't seem to do as well as I know I could if I were feeling healthy. " Aint that the truth... I think I really started to feel genuinely sick maybe 8th grade but I thought the same thing as you.. like "oh I'm just feeling depressed and its making me feel like s$#& it will pass",,, Then I think there was a point where I really started to think "I feel sick enough today that I feel like I need to be in a hospital bed".. Im sure you've felt that way too at some time...I feel the same way some days are super good and I'm hopeful and some are terrible and I feel like I'm not even doing anything. From what I've learned on here though is its really a process. It seems like the healing takes awhile since all those things that made our bodies so sick have to come out. I feel like its like you might have to feel worse to feel better kind of deal. Funny you say you're at SUNY Geneseo. Are you from NY originally? I'm from long island that's why I ask. Have you seen a doctor telling them you suspect celiac?

[glutenkid]

3 minutes ago, KathleenH said:

Hey, I hear ya when you say " I still can't seem to do as well as I know I could if I were feeling healthy. " Aint that the truth... I think I really started to feel genuinely sick maybe 8th grade but I thought the same thing as you.. like "oh I'm just feeling depressed and its making me feel like s$#& it will pass",,, Then I think there was a point where I really started to think "I feel sick enough today that I feel like I need to be in a hospital bed".. Im sure you've felt that way too at some time...I feel the same way some days are super good and I'm hopeful and some are terrible and I feel like I'm not even doing anything. From what I've learned on here though is its really a process. It seems like the healing takes awhile since all those things that made our bodies so sick have to come out. I feel like its like you might have to feel worse to feel better kind of deal. Funny you say you're at SUNY Geneseo. Are you from NY originally? I'm from long island that's why I ask. Have you seen a doctor telling them you suspect celiac?

Exactly! I thought I was depressed and I let it take over my life for a period of time. But assuming I'm right, I'm glad it's celiac because at least there's a clear path forward, as inconvenient as it may be. Being in a place where I felt forced to accept that I would feel bad the rest of my life has helped me appreciate what would otherwise be a devastating revelation. But it's true that it will take some time, especially if the disease has been activated since I was young. For people that have spent years ingesting gluten while they had celiac, the minimum time before seeing improvement is 6 months. So maybe the fact that I can say there's been at least gradual improvement means I'm better off than I think. I don't know. My hope is that because it took me so long to get to a point where I knew something was physically wrong means gluten doesn't damage my body all that quickly, compared to people who seem to develop symptoms later in life and are bedridden within a few months. Then if that's the case, maybe when all is said and done I won't need to be as strict as I am now. It'd be nice to eat out once in a while. I've yet to see how dating plays out when anything food-related isn't an option. Plus I've heard people can get sick from a kiss, if their partner hasn't washed their mouth out thoroughly. It depresses me just thinking about it...

I saw a doctor just yesterday, actually, but he was a huge ass%$@#. Barely paid attention to me when I spoke and often misunderstood what I was saying, even though I think I was being pretty clear. He also told me that I'd feel better by three months no matter what, even though my source for 6 months minimum is the UChicago Celiac Center website. After the visit I looked him up and saw he got very negative reviews from people who went to see him and heard from him that whatever symptoms they were experiencing were in their head, only to find out from another doctor that they had more serious issues (cancer, in one case). I don't take what he said to heart, but it was discouraging that I couldn't get any validation, since that's what's most valuable to me when I can't do anything but be patient. 

And yeah, I'm from the Syracuse region.

[Ennis-TX]

Yep 3 years in for me, spent life the same way pretty much. Looking for a partner in crime to help run my gluten-free bakery business and spend my life with is a pain. Well at least I have requirements down lol. Who knows might get lucky and find someone with celaics, I keep looking and posted here even, dating sites, etc.   Trying to pick people up at a gluten-free expo was amusing >.> we have a ongoing joke on this forum about we should try picking up dates at a GI clinic for celiacs. Funny thing is this diet, it makes you a damn good cook when you have to cook constantly from scratch for a lot of your meals. >.> nice selling point lol.......oh geeze this got off topic quick .

[KathleenH]

5 minutes ago, glutenkid said:

Exactly! I thought I was depressed and I let it take over my life for a period of time. But assuming I'm right, I'm glad it's celiac because at least there's a clear path forward, as inconvenient as it may be. Being in a place where I felt forced to accept that I would feel bad the rest of my life has helped me appreciate what would otherwise be a devastating revelation. But it's true that it will take some time, especially if the disease has been activated since I was young. For people that have spent years ingesting gluten while they had celiac, the minimum time before seeing improvement is 6 months. So maybe the fact that I can say there's been at least gradual improvement means I'm better off than I think. I don't know. My hope is that because it took me so long to get to a point where I knew something was physically wrong means gluten doesn't damage my body all that quickly, compared to people who seem to develop symptoms later in life and are bedridden within a few months. Then if that's the case, maybe when all is said and done I won't need to be as strict as I am now. It'd be nice to eat out once in a while. I've yet to see how dating plays out when anything food-related isn't an option. Plus I've heard people can get sick from a kiss, if their partner hasn't washed their mouth out thoroughly. It depresses me just thinking about it...

I saw a doctor just yesterday, actually, but he was a huge ass%$@#. Barely paid attention to me when I spoke and often misunderstood what I was saying, even though I think I was being pretty clear. He also told me that I'd feel better by three months no matter what, even though my source for 6 months minimum is the UChicago Celiac Center website. After the visit I looked him up and saw he got very negative reviews from people who went to see him and heard from him that whatever symptoms they were experiencing were in their head, only to find out from another doctor that they had more serious issues (cancer, in one case). I don't take what he said to heart, but it was discouraging that I couldn't get any validation, since that's what's most valuable to me when I can't do anything but be patient. 

And yeah, I'm from the Syracuse region.

Aww I'm sorry that unfortunate about the doctor. There are some bad doctors out there. I went to one before my diagnosis and told him I went to the bathroom and there was quite a bit of blood and that's never happened to me before. He looked at me like I was crazy and said "how do you expect me to help you with that." Needless to say I left crying... I digress... Don't let it get you down. Is there anyway you can look up some Gastroenterology centers in your area and look at their reviews and go to a good one? I would say you can still eat out but you need to be very careful...call the restaurants ahead of time and ask about gluten-free options and if they have separate fryers and how their staff takes precautions, etc. This would also help with the dating thing because once you find some places you can go to those places. As for the kissing thing totally depressed me too.. especially for our age. I'm pretty lucky because I do have a boyfriend so I'm not dealing with the whole explaining that to a new person you're dating but it's important. I guess you can see if it even makes you sick and if it does than have the conversation. I do know that once you find the right person they will deal with it and understand. My boyfriend was sad about it and still is but I think it would make him sadder if he got me really sick. I feel like unless they have food all over their lips than pecks are okay but open mouth kissing would be risky. 

[KathleenH]

10 minutes ago, Ennis_TX said:

Yep 3 years in for me, spent life the same way pretty much. Looking for a partner in crime to help run my gluten-free bakery business and spend my life with is a pain. Well at least I have requirements down lol. Who knows might get lucky and find someone with celaics, I keep looking and posted here even, dating sites, etc.   Trying to pick people up at a gluten-free expo was amusing >.> we have a ongoing joke on this forum about we should try picking up dates at a GI clinic for celiacs. Funny thing is this diet, it makes you a damn good cook when you have to cook constantly from scratch for a lot of your meals. >.> nice selling point lol.......oh geeze this got off topic quick .

Lmao this post was very amusing. Hahah, I hope you find that too. A gluten free bakery sounds awesome! I have yet to have any gluten-free desserts at all. I'm not much of a sweets eater but when I want it I want it bad lol. Any good suggestions for gluten-free desserts? 

[Ennis-TX]

19 minutes ago, KathleenH said:

Lmao this post was very amusing. Hahah, I hope you find that too. A gluten free bakery sounds awesome! I have yet to have any gluten-free desserts at all. I'm not much of a sweets eater but when I want it I want it bad lol. Any good suggestions for gluten-free desserts? 

Actually transitioning to a grain free line. Both my adopted parents are diabetic, so my earlier lines where already focused on low glycemic and used oat, bean, and almond bases for muffins, brownies, cookie cakes etc. But as I later started reacting to ALL oats like gluten (I am that 10% of celiacs that do it seems) and then discovered I had UC. I moved the lines go grain less based muffins, cookies, breads, and cakes. Right now I offer 3 kinds of cookies, various muffins, cinnamon cakes, Chocolate cakes, and Vegan cheesy breads. I also still do orders for my cookie dough pies, oat based muffins, bean based brownies and lemon bars. I also do candied almonds, artisan almond butters, various seasoned seeds. and granola and dried fruits. I have posted several of my recipes in the cooking section here.   My goods focus on staying super moist as I was stuck for a year eating the dry ass stuff that had in stores when I was first diagnosed. I also seem to crave the moist rich goods.

[KathleenH]

5 minutes ago, Ennis_TX said:

Actually transitioning to a grain free line. Both my adopted parents are diabetic, so my earlier lines where already focused on low glycemic and used oat, bean, and almond bases for muffins, brownies, cookie cakes etc. But as I later started reacting to ALL oats like gluten (I am that 10% of celiacs that do it seems) and then discovered I had UC. I moved the lines go grain less based muffins, cookies, breads, and cakes. Right now I offer 3 kinds of cookies, various muffins, cinnamon cakes, Chocolate cakes, and Vegan cheesy breads. I also still do orders for my cookie dough pies, oat based muffins, bean based brownies and lemon bars. I also do candied almonds, artisan almond butters, various seasoned seeds. and granola and dried fruits. I have posted several of my recipes in the cooking section here.   My goods focus on staying super moist as I was stuck for a year eating the dry ass stuff that had in stores when I was first diagnosed. I also seem to crave the moist rich goods.

Sounds delicious! I'll have to check out the cooking forum! Thanks!

[Theri]

On 4/18/2017 at 9:54 PM, KathleenH said:

Hi guys. I really need help/someone to listen/someone to understand. Today was absolutely horrible. I started out feeling fine this morning just a little tired but by noon or so an incredible headache washed over me and I've been sick the rest of the day. The headache wouldn't stop and along with it came stomach pain and worse joint pain than I normally have. I came back from class and basically passed out on my bed for hours and woke up to even worse joint pain and a nonstop gurgling uneasy stomach. Lately I'm so thirsty nothing quenches my thirst and I cant even sleep through the night because I have to pee so many times the amount of water I'm drinking.  I've been trying so hard to be careful and not contaminate myself. I'm not sure if this is contamination or healing. Can recovery really be this painful? I'm 2.5 weeks into recovery. I couldn't stop crying this afternoon I just wanted it all to go away and I don't know if it's from me not being careful or this is just part of the process. I feel so defeated I have no energy, I don't even remember the drive back home today from classes. If I had the choice to stay in bed all day today I would have and probably slept the entire time. I eventually mustered up the strength for a quick shower and to vent on here. I just don't know if I'm even doing anything right...I read all the books I got and asked the forum questions and I follow all the wonderful advice given to me... I just feel pretty down today because I just want to be better already I can't live this way everyday.. It's especially hard around this time of the year since I have finals which are especially important since I'm a senior and need to pass because I'm graduating in May. All day today I just wished someone was here to take care of me which is very unlike me since I'm way too independent for my own good. I'm just very overwhelmed  

This is normal gluten withdrawal. I just read adding salt with iodine helps with the frequent urination part. The time frame varies for each individual. Sorry you are going thru this with your finals. Google gluten withdrawals, you will find helpful ideas. God Bless!

[KathleenH]

16 hours ago, Theri said:

This is normal gluten withdrawal. I just read adding salt with iodine helps with the frequent urination part. The time frame varies for each individual. Sorry you are going thru this with your finals. Google gluten withdrawals, you will find helpful ideas. God Bless!

Hi, thanks for your reply. Yes, I cant wait till school is over so I can have some time to rest.

[Theri]

On 4/20/2017 at 2:44 PM, KathleenH said:

Hi, thanks for your reply. Yes, I cant wait till school is over so I can have some time to rest.

? Rest will really help. Let us know how you survive finals.