Diagnosed A Year Ago, I Am Now Sick Again. So Discouraged

[darknessvisible]

Hello everyone,

 

After ten years of illness, starting in my early 20s, I was diagnosed with celiac almost exactly a year ago. For the first few months, I felt so much better. Occasionally I'd be glutened and feel like I was dying, but overall I felt great (and the city that I was visiting immediately post-diagnosis had amazing celiac-safe restaurants!) Because gluten made me feel horrible, I never was tempted to cheat, at all. The idea of eating a croissant again makes me feel nauseated.

 

Things started to go downhill at the end of February 2014, when I returned from a horrible trip to find that my roommates (who had also been gluten-free for health reasons) had started eating gluten again and acting like jerks. Luckily, they were due to leave the apt. on 31 March, so I suffered through it. Then, in April/May went on a very careful diet: I cut out alcohol, lactose, peanuts, most gluten free products, and tried to cut out sugar. Ever since then, I have become even more sensitive to gluten. I've been glutened several times since (due to cross contamination in the kitchen, twice, and something I was eating that was supposedly gluten-free but obviously isn't.) I've spent the past week feeling terribly and tonight I feel like death again, after eating at our city's only gluten-free restaurant (for the record, it's not the restaurant's fault, but mine--I tried out their famous fish'n'chips even though I should be careful about fried food. What.an.idiot.)

 

My neuropathy is back and my gut hurts.  I'm so sick, tired, and discouraged. I feel like it's such a fight: I never eat out (I sneak my own food into restaurants with my friends; yes, it's impossible to embarass me!) and I am still avoiding lactose, which is also a trigger. I rarely drink alcohol. I just feel like I've let myself down: my bloodwork results are back and although my antibody levels haven't come in my cholesterol, thyroid, and iron are all off. I am so disappointed in myself and discouraged. I feel like I'm failing and that it's my fault I'm still sick. I also feel like it's a Herculean effort to avoid cc: even though I am very vigilant, gluten seems to be everywhere. 

 

I am moving into a different apartment by myself, for the next two months, which should prevent more cc. (The kitchen issues are due to roommate accidents; I live in a super expensive city and for the moment can't afford to live alone.) I am also going off all processed foods, insofar as it's possible; I will probably go back to paleo, which I had success with, or going GCED, which is similar to what I have already done.  I just would like some encouragement, I think: is there anyone out there who managed to come back from this kind of downward movement? Have I completely failed? I need to feel like this is a temporary setback, not that I've screwed up totally. 

 

 

[MermaidPaz]

I can relate.  I live with people who love their bread and prove it by leaving crumbs wherever they can.  I'm familiar with the CC battle by now.  I know that words can only do so much, but this will be temporary.  Every time I am accidentally exposed, it feels like the end of the world and as if I've gone back to square one, even though I know I'll rebound within a week or so.  You just have to keep telling yourself that it won't last until the misery is over.  It's definitely not a failure.  And it sounds like you'll have a little time to be in your own kitchen and not have to be so hyper vigilant.  That's a good thing.  Best of wishes to you and I hope that your recovery goes quickly.  Hang in there.

[dilettantesteph]

You haven't complely failed.  It's a temporary set back.  You did it before.  You can do it again.   If you are like me, that depression comes along with the gluten reaction.  It will go away as you recover.  I also seemed much more sensitive over time.  I eat very few processed foods and don't go to restaurants.  It works.  I got sick a lot before I figured out that I needed to do this.  It can be done. 

[darknessvisible]

Thank you all for the reassurance! I think I got really down on myself because I feel like I need to be the 'perfect' patient and it's so hard. And my regular roommates are great (one of them is gluten-free herself, but not as careful because she's intolerant) and the other is careful, but issues happen. I just feel like I've been trying to figure out what makes me feel good, and what makes me feel terrible. And what makes me feel good is constant hypervigilance and whole foods only. And what makes me feel bad is everything else. But you guys are right, I'm depressed a bit and also I haven't slept (when I'm sick I can't sleep), which is definitely affecting my viewpoint.

[notme]

don't be so hard on yourself - everybody has setbacks!  when i get glutened, i get bummed out and angry, so give it a minute and you will feel better  i have 'reset mode' when i feel this way and waiting for the gluten reaction to leave.  i have some foods that are my 'go to' foods:  plain is better.  so, i will not be so adventurous with my meals for awhile.  i take long, hot showers - even if it really doesn't help physically, i feel like i am detoxing.  and drink plenty of water.  and rest, even if you can't sleep.  it's celiac *disease* so, you are sick and you should treat it as such.  baby yourself and little by little you will feel better.  this beast is hard to manage and it's going to knock you down from time to time.  i see you are new, so welcome to the forum, where there are people who know how you feel.  i hope you feel better soon.  

[darknessvisible]

Thank you! That's very kind, and helpful. You're right about mood--I was tired and sick and feeling terribly. I have been taking baths with epsom salts and drinking hot cinnamon water and having a bit of mustard on my food (I know it's strange but a bit of good, organic mustard really helps me.) I am going to go on the special diet, and be really careful for a couple of months (like--insanely careful) and we will see.  I am also going to watch my diet re: thyroid. That's what's really bumming me out--the thyroid issue. Perhaps it's strange, but for me, when the problem was 'just' gluten I am able to pretend the problem isn't my body, but rather this external polluting force. But if it's my thyroid, then the problem is internal--it's not this contaminating agent, it's me. Anyways, according to the research I did this weekend, I have subclinical hypothyroid, and my tsh levels aren't alarming--yet. I am going to see if a couple of months of careful diet can help. Also, eating more dairy and less kale. 

 

I really appreciate the warm welcome, btw! 

 

 

don't be so hard on yourself - everybody has setbacks!  when i get glutened, i get bummed out and angry, so give it a minute and you will feel better  i have 'reset mode' when i feel this way and waiting for the gluten reaction to leave.  i have some foods that are my 'go to' foods:  plain is better.  so, i will not be so adventurous with my meals for awhile.  i take long, hot showers - even if it really doesn't help physically, i feel like i am detoxing.  and drink plenty of water.  and rest, even if you can't sleep.  it's celiac *disease* so, you are sick and you should treat it as such.  baby yourself and little by little you will feel better.  this beast is hard to manage and it's going to knock you down from time to time.  i see you are new, so welcome to the forum, where there are people who know how you feel.  i hope you feel better soon.  

[notme]

my son's girlfriend has problems with her thyroid - last year she was an absolute wreck  because when you're thyroid is out of wack, everything else is, too.  it took some adjustments to her thyroid meds until they got it back in balance *for her* - i guess that is what is difficult about treating thyroid problems is that everyone's body is different and there isn't a perfect combination that will work for every person.  i don't have a problem (yet - i am expecting it lolz)  she finally got her meds dosage/type that worked for her and she eats mostly gluten free (she's not celiac or ncgi) and works out religiously.  that seems to have her body "running well" - the difference is night and day.  last year she was upset over everything, we just let her slide.  she went back to her doctor probably 20 times in a few months, but they got her straight.  hang in there, toots  

 

maybe a 'thyroider' will offer up some better advice on thyroidism lolz  

[darknessvisible]

my son's girlfriend has problems with her thyroid - last year she was an absolute wreck  because when you're thyroid is out of wack, everything else is, too.  it took some adjustments to her thyroid meds until they got it back in balance *for her* - i guess that is what is difficult about treating thyroid problems is that everyone's body is different and there isn't a perfect combination that will work for every person.  i don't have a problem (yet - i am expecting it lolz)  she finally got her meds dosage/type that worked for her and she eats mostly gluten free (she's not celiac or ncgi) and works out religiously.  that seems to have her body "running well" - the difference is night and day.  last year she was upset over everything, we just let her slide.  she went back to her doctor probably 20 times in a few months, but they got her straight.  hang in there, toots

 

maybe a 'thyroider' will offer up some better advice on thyroidism lolz  

Yikes! I am glad she got it under control. For the moment, I'm going to try non-medical options, simply because a few people I know with subclinical hypothyroidism went nuts on thyroid medication. I think it's a very delicate art and most doctors have problem getting the dosage right. because I'm at a critical period at work, I can't afford too much uncertainty/emotional chaos in my life! 

 

I hope a 'thyroider' will have suggestions for initial steps to take before trying medications!

[nvsmom]

As a "thyroider", I agree with Arlene.    Thyroid problems can throw your whole body out of whack, and it does not help that many of the hypothyroid symptoms can mimic celiac disease.Thyroid problems can be kicked off by untreated celiac disease too, so technically your thyroid issue could still caused by gluten.... it may still be that polluting force!

 

Another problem is that doctors won't treat subclinical hypothyroidism when I think they often should... and they definitely should have for me.  Up here my TSH range was 0.2-6.0. I did not realize that it was an insanely broad range so when my TSH was dancing bewteen a 2.5 and 6.5, and my doctors said I was normal, I dismissed the whole problem... for 15 years.  LOL     

 

I was finally treated for hypothyroidism when my TSH was quite high, but I can honestly say that I did not feel any different when my TSH was a 2.5 than when it was 14.

 

Most people will feel their best when their TSH is close to a 1, and by close I mean 1.5 or 0.7 and not a 3 or 5.  You also need to look at your free T4 and free T3, both of which should be in the 50-75% range of your lab's normal reference range - when I got my free T's into that sweet spot I FINALLY felt better (even though my TSH was now a 0.02 LOL).  

 

Checking the free T's is key.  For example, when my TSH was in the teens, my free T3 was at about 10% of the normal range.  When I was on an almost full replacement dose of synthetic T4 hormone (Synthroid), my free T3 came up close to 20% and I felt no different yet my doctor declared me fine because my TSH was below a 3 - suddenly my hypothyroid symptoms were a coincidence and caused by something else... he never did say what.     I switched doctors and started taking meds with T3 until my free T's were in the sweet spot, and I felt good!  My TSH looks bad but I have no hyper symptoms... It's just a matter of which test are you treating to.  KWIM?

 

Read up on thyroid problems.  They are a lot trickier to treat that celiac disease (in my opinion) but once you have all your info, and a good doctor, it isn't hard to feel good again.  

 

Best wishes. I hope you are feeling better soon!

[darknessvisible]

As a "thyroider", I agree with Arlene.    Thyroid problems can throw your whole body out of whack, and it does not help that many of the hypothyroid symptoms can mimic celiac disease.Thyroid problems can be kicked off by untreated celiac disease too, so technically your thyroid issue could still caused by gluten.... it may still be that polluting force!

 

Another problem is that doctors won't treat subclinical hypothyroidism when I think they often should... and they definitely should have for me.  Up here my TSH range was 0.2-6.0. I did not realize that it was an insanely broad range so when my TSH was dancing bewteen a 2.5 and 6.5, and my doctors said I was normal, I dismissed the whole problem... for 15 years.  LOL     

 

I was finally treated for hypothyroidism when my TSH was quite high, but I can honestly say that I did not feel any different when my TSH was a 2.5 than when it was 14.

 

Most people will feel their best when their TSH is close to a 1, and by close I mean 1.5 or 0.7 and not a 3 or 5.  You also need to look at your free T4 and free T3, both of which should be in the 50-75% range of your lab's normal reference range - when I got my free T's into that sweet spot I FINALLY felt better (even though my TSH was now a 0.02 LOL).  

 

Checking the free T's is key.  For example, when my TSH was in the teens, my free T3 was at about 10% of the normal range.  When I was on an almost full replacement dose of synthetic T4 hormone (Synthroid), my free T3 came up close to 20% and I felt no different yet my doctor declared me fine because my TSH was below a 3 - suddenly my hypothyroid symptoms were a coincidence and caused by something else... he never did say what.     I switched doctors and started taking meds with T3 until my free T's were in the sweet spot, and I felt good!  My TSH looks bad but I have no hyper symptoms... It's just a matter of which test are you treating to.  KWIM?

 

Read up on thyroid problems.  They are a lot trickier to treat that celiac disease (in my opinion) but once you have all your info, and a good doctor, it isn't hard to feel good again.  

 

Best wishes. I hope you are feeling better soon!

Thank you so much for your response! I see what you're saying--that the 'normal' range is still a bit bonkers. I am still a bit weirded out by the idea of meds, the reason being that I have to finish my thesis, and VERY soon, or I will have to go into huuuge student debt (I've already been delayed and had to take out loans because of celiac, yay.) I am afraid that if I tinker with meds, I will start going nuts. I really really can't afford health problems, but I also cannot afford to take weeks off work because I feel terribly, or crazy. (Also, I don't want to be writing, alone, and feeling a bit nuts. That's a bad situation!) 

 

Do you have any tips for me about diet, exercise etc? Or supplements? Are there lifestyle changes you found to be helpful for yourself? 

 

Also, I have been even careful-er lately and it's helped. I am going on lockdown til September. Absolutely zero restaurants, unsafe foods, etc. Meats, vegs, fruit, dairy. That's all. No risks. I am tired of feeling sick!

[GFinDC]

Hi DV,

 

You can try an Natural Sources Raw Thyroid.  It's available without prescription.  I take it once a week.  Selenium may help also.  Check your vitamins because not all of them have it.  Or you can eat a Brazil nut once  a week or so.  I like NatureMade multivitamins or single vitamins.  They are one of only 4 companies that have their vitamins contents verified by an independent lab.

[nvsmom]

Thank you so much for your response! I see what you're saying--that the 'normal' range is still a bit bonkers. I am still a bit weirded out by the idea of meds, the reason being that I have to finish my thesis, and VERY soon, or I will have to go into huuuge student debt (I've already been delayed and had to take out loans because of celiac, yay.) I am afraid that if I tinker with meds, I will start going nuts. I really really can't afford health problems, but I also cannot afford to take weeks off work because I feel terribly, or crazy. (Also, I don't want to be writing, alone, and feeling a bit nuts. That's a bad situation!) 

 

Do you have any tips for me about diet, exercise etc? Or supplements? Are there lifestyle changes you found to be helpful for yourself? 

 

Also, I have been even careful-er lately and it's helped. I am going on lockdown til September. Absolutely zero restaurants, unsafe foods, etc. Meats, vegs, fruit, dairy. That's all. No risks. I am tired of feeling sick!

 

I did go hyper thyroid when I first switched to a T4 & T3 medication (Erfa's Thyroid - similar to Armour).  My Free T3 went just above my lab's normal range and I felt pretty jittery - just not right.  It was such a complete 180 degree switch from where I had been previously that I knew immediately what was going on.  I'm sure others can have a more severe reaction that I did when they go hyper, but I personally found my short stint of "hyper" much more tolerable than my usual hypo symptoms.... But that is just my own personal experience. I can understand not wanting to experiment to much while doing your thesis. If you go up slowly in meds, you should be able to avoid a bad experience if you decide to treat it now.

 

I don't have any good tips for exercise or diet. I'm all for exercising regularly and eating whole foods, but lately (and by lately I mean the last few months LOL) I haven't done that for myself.  I know that once I get a few weeks into eating better and exercising, I DO feel better, but in those first few weeks I usually feel worse.  

 

I take a fair number of supplements. I take a couple of drops of iodine per day because I don't use iodized salt. I take L-glutamine which is supposed to be good for healing muscles and the intestinal tract - it really helps with reducing post exercise soreness. A good multivtamin and a few other supplements and that's it.

 

Does dairy affect you at all? About 50% of celiacs are lactose intolerant in the first 6 months after diagnosis. Many people find that they can reintroduce dairy after they heal. After a year gluten-free, I can eat ice cream again.  

 

Hang in there.

[Pegleg84]

Welcome to the forum!

 

I don't have anything to say about thyroid issues, but I can say a word or two about "setbacks". I think we've all had them, and then we feel like crap and that we're not doing things right and many tears and frustration and days you don't want to do anything cause it all sucks... The you kick yourself out of bed and realise that if you don't do something about it now, it will just mean longer feeling like crap.

But you HAVE decided to do something, which is great. Living with roomies has got to be tough. I've lived on my own since about 5 months after I went gluten-free, mostly because I didn't want to risk sharing a kitchen with other people who might not "get it". Living on your own for a while is not a bad idea. That way you can control what comes into your kitchen. A couple years ago, after a particualrly nasty glutening, I went about 2 months of eating only my own cooking, and it did really help. I also eat mostly whole-foods, and almost entirely organic/natural. Preservatives haven't agreed with me for a long time, and artificial chemicals are just bad for you. Taking time to figure out what your body can handle is definitely a good idea.

 

As others have discussed, part of the problem could be your thyroid. It's also possible you could be developing intolerances to other foods (dairy/casein, soy, eggs, corn, nightshades....) so if after 2-3 weeks of being absolutely gluten-free you aren't getting better, look at other possibilities too.

 

Once you figure everything out, you can decide whether its worth living on your own, or find roommates who are willing to respect your strict need for a gluten-free kitchen. Maybe YOU find the roommates, an not just move in with others who say they'll be ok. You have to keep yourself safe.

Anyway, welcome to the forum, and good luck!

[darknessvisible]

Welcome to the forum!

 

I don't have anything to say about thyroid issues, but I can say a word or two about "setbacks". I think we've all had them, and then we feel like crap and that we're not doing things right and many tears and frustration and days you don't want to do anything cause it all sucks... The you kick yourself out of bed and realise that if you don't do something about it now, it will just mean longer feeling like crap.

But you HAVE decided to do something, which is great. Living with roomies has got to be tough. I've lived on my own since about 5 months after I went gluten-free, mostly because I didn't want to risk sharing a kitchen with other people who might not "get it". Living on your own for a while is not a bad idea. That way you can control what comes into your kitchen. A couple years ago, after a particualrly nasty glutening, I went about 2 months of eating only my own cooking, and it did really help. I also eat mostly whole-foods, and almost entirely organic/natural. Preservatives haven't agreed with me for a long time, and artificial chemicals are just bad for you. Taking time to figure out what your body can handle is definitely a good idea.

 

As others have discussed, part of the problem could be your thyroid. It's also possible you could be developing intolerances to other foods (dairy/casein, soy, eggs, corn, nightshades....) so if after 2-3 weeks of being absolutely gluten-free you aren't getting better, look at other possibilities too.

 

Once you figure everything out, you can decide whether its worth living on your own, or find roommates who are willing to respect your strict need for a gluten-free kitchen. Maybe YOU find the roommates, an not just move in with others who say they'll be ok. You have to keep yourself safe.

Anyway, welcome to the forum, and good luck!

 

Thank you, Pegleg84! I am starting to feel better, thankfully. My celiac panel came back negative, which is interesting. I think the issue was something that I was eating that isn't safe, despite the numerous quality assurance statements etc. on the packaging. I am eating whole foods (for the most part...I do like these biscotti) and I feel fine again. I AM bouncing back better since I started l-carnitine, too, which is good. I am always able to get out of bed and do stuff, for which I'm grateful. Although I do need more sleep. Right now, I'm working on moving out (trying to find transportation to my new city with cats! Complicated.) I think that that will help. In any case, thank you all so much for your non-judgmental support. I'll update you when I figure out the thyroid/other intolerance issues. (So far, it's mostly lactose, I think, and chickpeas/pine nuts.)