Still Feeling Awful. All The Time.

[upsilamba]

Hey all,

 

I've posted here a few times before - I got diagnosed with celiac last June, at first felt much better (briefly), and then kept getting glutened about once a month for the next several months (and made the fun discovery that my symptoms are crazy severe and last for about 3 weeks - paralyzing depression/anxiety/brain fog, then bad pain/gastro stuff/vomiting, then exhaustion and brain fog and continuing gastro stuff that hangs on a long time). 

 

So at the start of November, after getting glutened twice back to back and getting just ridiculously ill, I got super super strict. No restaurants, almost no prepared foods except some gluten-free pasta, peanut butter, canned tomatoes etc. No dairy (just in case), and no alcohol, no anything I thought remotely might bother me. Basically I've cooked every single thing I've eaten for the last 3 months...hoping it would result in feeling at least a bit better.

 

I had my antibodies checked in December and they were already down to normal levels (under 20), which shocked my doctor. So that's great news, but I still feel like crap, constantly. Even since November, I still  get D pretty much daily (usually a few times a day), plus pain - I've had a few stretches of weeks at a time where I'm in bad pain after every time I eat, or it just comes on suddenly for no reason. And I'm exhausted and struggle to focus a lot of the time (and since around the holidays, I've started getting these bouts of just ridiculous exhaustion where I can't get warm, all my limbs feel heavy, I'm wobbly or walking into walls or dropping stuff, etc, and it'll last 2-3 days at a time). And all kinds of other weird symptoms that come and go too.

 

I finally got an appt with a PCP this past week who seemed decent since I haven't had a consistent one for a long time, and she drew a ton of blood and said she's testing me for basically everything she can think of (thyroid,deficiencies, and then a long list of increasingly scary stuff...). It's tough starting with a new dr who doesn't know me at all (and vice versa) in the middle of all this, I feel like there are so many issues to go over that I'm probably missing important things or phrasing stuff wrong. But now I'm waiting indefinitely for results to come back (not sure if I'm more terrified they'll find something really awful, or that they won't find anything and I'll go back to thinking I'm just crazy). i'm planning to try an elimination diet soon too in case other intolerances are the issue, but I'm just not quite up to taking on everything all at once.

 

But what it comes down to is I've been sick almost constantly for 7 months now with no real explanation, and I'm just not sure how to keep dealing with all this. I'm also in a very demanding job which I do like, but I'm thinking I'll have to face up to quitting it soon if things don't get better. And me turning into a constantly melted-down, exhausted, can't go out to eat/drink anywhere, needing to cook all the time person is starting to put strain on my relationship too, which feels even worse. And I'm only 25! I feel like my life's turning into something I can't really understand anymore.  I'm not sure I really have a question, but if anyone's been through stuff like this or managed to deal with dr's successfully and figure out/fix symptoms that just would not go away, I think I could use a pep talk... : )

[ravenwoodglass]

Sorry you are going through this. Have you eliminated dairy products? If not that would be your first step. An elimaination diet can be helpful if pinpointing other intolerances. IMHO it is best to see an allergist who will test for true allergies and then give you a starting point that will give you the nutrition and calories you need. It can be hard to find one who will deal with intolerances but it will be worth it if you do decide you need to go that route.

Hope you are feeling better soon.

[GFinDC]

Hi Upsilamba,

 

Sorry you are going thru a rough patch there.  It may seem like it will last forever but it won't.  Your body does need time to heal, and your gut needs to establish a new bacterial balance.  Plus when your digestion is off you tend not to absorb vitamins and minerals well.  I take a Nature Made brand multi plus 50 for men.  They have a version for women also that has iron in it.  It might be worth a try.  I recently started taking some extra selenium and that helped my energy levels.  Don't over do it on the selenium tho.

 

Are you taking digestive enzymes and pro-biotics?  Those can both help with digestion.  Sometimes other foods can cause symptoms for people.  Dairy is a biggie, but also soy, eggs, gums, corn or any of the top 8 food allergens.  If things don't improve after a month you might want to consider additional food intolerances.  Try an elimination diet and see if that helps?

[upsilamba]

Hey, thanks for the replies. I do take a multivitamin (actually the naturemade one with iron), and digestive enzymes and probiotics. and i've also been avoiding dairy almost completely for 3 months (very occasionally i bake or cook w/ a little butter - but it doesn't seem to make a difference for how i feel either way, so i think i just avoid it out of habit at this point). since i only eat what i cook (very very few pre-made foods, although i'm now eating a few more recently since abstaining hasn't seemed to make a difference), i also have very little in the way of gums or soy. 

 

i'm going to try a full-on elminiation diet soon, but i'm worried about if i'll be able to tell whether something bothers me, since I feel sick so often it's really tricky to tell if it's been brought on by anything specific. 

 

at this point i'm just getting so frustrated - i feel like i've turned my life pretty upside down with no eating out (so very little going out) and spending tons of time cooking everything from scratch, which would totally be worth it if i was feeling better. but three months into the whole crazy food regime if anything i feel even worse : ( i've always been totally on board with the whole idea of being able to make myself better through controlling my diet, but the feeling better part is still holding out on me, so i'm feeling like this wasn't supposed to be the deal, haha. 

[anti-soprano]

Hi Upsilamba,

See if anything in this thread rings true for you: https://www.celiac.com/forums/topic/105835-mast-cell-activation-syndrome-mcas/

 

I wish you the best of luck with your doctor.  At least he/she is testing everything without first suggesting that you're nuts.  BTW- you're not crazy.  I can tell you that for a fact.  And you will figure this out in time.  

 

-Shellie

[ravenwoodglass]

 

i'm going to try a full-on elminiation diet soon, but i'm worried about if i'll be able to tell whether something bothers me, since I feel sick so often it's really tricky to tell if it's been brought on by anything specific. 

 

When I did my doctor guided elimination diet he had me go with my 5 allowed foods and beverages until my symptoms subsided which took about 2 weeks. Only then was I allowed to add in new items one at a time, in pure form, three times a day for a week. If no problems arose I was allowed to keep that item and then add another food. I should note that my starting foods were all ones I rarely ate and a couple were foods I really didn't like but he said that foods I rarely ate would be the least likely to be ones I was reacting to. This method allowed me to easily pinpoint foods that were problems but it was a rather long process and boy did I get tired of peas and sweet potatoes. It was well worth the trouble though.

[dilettantesteph]

I hope that you feel better soon.  Some celiacs are sensitive to lower levels of gluten contamination that others.  That a possibility for you to discuss with your doctors.  Here is a research study about that.  Open Original Shared Link

[notme]

food journal if you can't do an elimination diet - you might be able to see what your're currently eating and see a pattern.  i had to cut out a bunch of stuff and then add them back in - except soy, which i still have a gluten-mimicking reaction to.  but things like peppers, some cheeses, raw greens & veggies <they were ok with my gut as long as they were cooked to mush)   peppers, i just got back, like, in the last 6 months.  it takes awhile to heal    i hope you are taking a probiotic and enzymes - i still have to take my probiotic 2x a day and i've been doing this for 3 1/2 years.  good luck    hope you feel better!

[upsilamba]

Thanks guys! i'm having another cold and wobbly day, but at least my brain is sort of working so that feels a lot better. Here's hoping it lasts a little while this time : )

 

I think i definitely need to try the elimination diet and see what it turns up - I'm trying to find a good nutritionist to work with for it, so once I can get an appointment for it that'll be my next thing to take on.

 

the mcas thing is really really interesting - thanks for sharing that, shellie! i had a moment of total horror when i saw the "no leftovers" thing (i was like AHHH but I cook everything so HOW????), but then i saw that you can freeze stuff at least and I managed to start breathing again, haha. Some of it does seem like it might fit (the cold sensitivity/inability to get warm - and heat's definitely not my friend either, the gastro stuff, the wheezing and the joint issues...and I don't think i need to mention the brain fog and anxiety). But I've never had hives or any of the typical allergic reactions listed (seasonal/dust allergies, but nothing that bothers me too much most years).

 

I'm supposed to see the new PCP doc in a few weeks, so I'll print out some of those resources and see if she'll test me for it! And maybe some of that quart of blood she took last week will turn out to have some other answers, too...

[cahill]

When I did my doctor guided elimination diet he had me go with my 5 allowed foods and beverages until my symptoms subsided which took about 2 weeks. Only then was I allowed to add in new items one at a time, in pure form, three times a day for a week. If no problems arose I was allowed to keep that item and then add another food. I should note that my starting foods were all ones I rarely ate and a couple were foods I really didn't like but he said that foods I rarely ate would be the least likely to be ones I was reacting to. This method allowed me to easily pinpoint foods that were problems but it was a rather long process and boy did I get tired of peas and sweet potatoes. It was well worth the trouble though.

I agree with ravenwoodglass ,   A STRICT elimination diet is a very long process but well worth the time and trouble.

 

When I did my elimination diet the first step for me was eliminating coffee from my diet. That was a process in its self

 

 The other thing I would suggest ,, if you are not able to do a STRICT elimination diet,, is to eliminate Soy,Corn, Diary and Nightshades from your diet and then slowly reintroduce them to judge your reaction to these foods.

[Azenka]

Probiotics never made me feel any good.