Jumping in a little late, but just want to say welcome to the club! Glad you'll have a firm diagnosis and can start looking forward to feeling BETTER! You had already started feeling better when you went gluten-free the first time, so it's all up from here. It might feel like an uphill battle for a while, and your body is going to do all kinds of weird things for a few months, but it's just readjusting. As others have said, stick to natural, unprocessed foods. Yes, you will have to learn to cook, but make a big batch of something simple and eat leftovers for a few days. One evening of prep could feed you for a week. Making the time and effort to do that is much better than wandering the streets hungry. And traveling is do-able too. It just takes a lot more advance planning.
Eating out is definitely the hardest. Find out where in your area you might be able to get something safely. If there's a spot you love to go, talk to the chef/management and see what they can do for you. If you're invited out with (non-jerk) friends, either suggest a place you can eat safely, or eat beforehand, or bring your own. You can easily go out for coffee or a drink or a walk or whatever. And yes, if someone doesn't want to go out with you because you can't kiss them at any moment and have to be careful about what you eat so you don't get horribly sick... then they are definitely not worth it. You will find the person who doesn't care about that, and who will be supportive. they are out there. There's lots of them.
Oh, and since no one said it, the "cross-reactivity" thing is more or less bullshit, meant to sell a useless test. Yes, many Celiacs end up developing temporary or permanent intolerance to other things, but it has nothing to do with other proteins being mistaken for gluten. As far as research stands, if you have another intolerance (dairy, soy, etc), it can cause inflammation and indigestion and other fun, but it won't trigger the same immune response/intestinal damage as gluten will (someone back me up on this!)
Also, this is still one of the best places on the internets to get experienced and informed and compassionate advice. I've been at this for almost 8 years, and couldn't have done it without this forum (which is why I'm here trying to pass that on a little). You will get better. It will take time. It might never be 100% again, but 90% isn't bad. Much better than feeling horrible all of the time.
Anyway, we've got your back!
Welcome to the forum. I am so sorry to hear the grief and pain you've been through trying to get diagnosed, and after. Celiac Disease can do crazy things to our bodies and brains. No two people have the same symptoms, and it can take a long time to heal. There's lots of trial and error, and you might feel like things are worse before they get better, but they WILL get better.
As others have said, right now you should be eating just naturally gluten-free food: veggies, fruit, unprocessed meat (no sausages, sorry), fish, nuts should be ok too if you can eat them. Avoid dairy and grains for a while. Your body needs to heal, and that could take months or a year. It sounds like your family is trying to help (new dishes, etc). I also recommend cooking for yourself when you can, then you have control over everything.
I have to say that the anxiety was the worst symptom I had before going gluten free, and even now it's the worst part when I accidentally eat something I shouldn't. One thing I've learned is to try not to focus too much on your symptoms, because our minds have a tendency of making them feel worse (this is a hard thing to do, but good to remember). Also, realizing that while you'll start to feel much better, you might never get to 100%. For me, realizing that has helped. I might not be 100% better, but I am 90% better, so feel not good sometimes, which is much much better than feeling horrible all the time.
Most Celiacs have problems with a few other foods. For me it's dairy, soy, and maybe nightshades (trying to figure that out now). Only you can figure out what makes you feel better or worse. These are intolerances, and there aren't any medical tests for them. You have to not eat them for at least a month and see if you feel better. My motto: if it makes you feel like crap, don't eat it!
Anyway, know that we're on your side and always here if you need advice or just want to vent. Everything feels weird and horrible and hard at first, but it will get better. It might take a year or two to see a big difference, but I think you will.
I have reached Nightshade Challenge December (really doesn't have the same ring to it).
Last weekend, I was away for a wedding, and while I didn't deliberately seek out nightshades, I definitely ended up eating some potatoes (some really good ones!) and a bit of tomato/pepper in salads and seasoning. This past week I've eaten potatoes a few times (roasted and some chips), and last night I broke down and had some chili pepper (hot sauce).
I haven't had any distinct symptoms. Did have a really weak/anxious/bad day on Sunday, but was PMS-y, tired, recovering from a party the night before, so that wasn't a big surprise. Any gut pain this week I blame on my lady time doing it's thing. I have been feeling a bit weaker this week though. Not achy, but my muscles just not working at full capacity. (also, pretty sure I didn't get glutened. Everywhere I ate was super careful and there was nothing suspicious. I would have been hit by usual symptoms by now. Possible I got into a bit of dairy, though)
This morning though, things are happening! My right arm is twitching like crazy (not painful, but driving me nuts), hands are very cold, a bit tingly. Nothing horrible but definitely a symptom I haven't had in a while. I think I'll stop the nightshades for a few days and see if it gets better/worse, and try again.
Have to say, the challenge might be the hardest part of this. Always difficult to tell exactly what causes what.
Any advice for testing all this properly?
Hmm, I have no idea. the bag is still sealed. I knew I had a weird flour hiding in the back of my cupboard. though it was going to be sorghum or something but SURPRISE!
I guess I'll have to start looking up recipes...
I rarely bake, and was thinking I should do some because a: it's getting cold out, and b: I've got a bunch of random flour I should use up before it goes off.
Discovered in my cupboard: a full bag of AMARANTH flour?! What ever possessed me to buy amaranth flour?
So, what do you do with amaranth? I read it's better for savory things?
Also in my cupboard/fridge/freezer: buckwheat flour, brown rice flour, coconut flour, maybe oat flour (or can grind some into flour) ... that's about it right now.
Also, flax meal, tapioca starch, egg replacer, baking powder/soda, etc. I think I'm out of xanthan gum.
Any suggestions? I'm dairy/soy free too.
I want to get this stuff used up, and hopefully have something tasty to show for it.
on week 4 and sticking to it!
I've had japanese sweet potato before. Yes, they're more red/purple on the outside and lighter on the inside.
Also, if you slice beets thin and roast them, they also make great chips.
This weekend I'm going away for a wedding, and will try to avoid nightshades but definitely defaulting to "if it's gluten-free, I'm eating it".
Next week, I'll start the "challenge" part, and reintroduce chili peppers/powder/sauce and OMG I CANNOT WAIT! Hardest part has been not reaching for the jar of chili garlic sauce that I use on many many things. fingers crossed i'll be ok on that front.
Then comes potatoes, which might result in me crawling around with body aches. We shall see.
Let's keep this thread going until the end of the month, at least!
No lactose or cassein for me. I've gotten to the point that I can handle a teeny bit of cheese every so often, or at least am willing to have a cheese hangover.
I think it's definitely possible that damage from gluten (even getting glutened once or twice a year can indeed have long-lasting consequesnces) is causing IBS symptoms, but the jury's out on that. For now I'm treating it like I have both, and being a: super duper extra careful about possible gluten exposure, b: staying away from my know intolerances, dairy and soy, c: trying to identify other problem foods and things that might trigger IBS symptoms (foods, stress, etc).
I've actually been feeling pretty good in the gut department lately, so that's nice, though it doesn't help me solve the mystery.
Oh, any recommendations for good probiotics that won't break the bank?
Hm, it's always possible, and I'll consider that the next time (hopefully not for a while!) I have a flare up of IBS-symtoms (PAIN!). Problem is also that I don't have a baseline because my bloodwork was negative before I went gluten-free (long story. don't want to get into it), not sure if anything would show up.
In any case, I'm not entirely convinced that the IBS symtoms are caused by separate triggers, or if they could be another symptom of getting glutened. Parsing it all out is going to be a long slow process, it looks like.
Also, glad you're feeling better! That sounds horrible! A friend of mine (also celiac) went through something similar recently, got her endoscopy redone and everything and was still off the charts. Not sure how great her diet was though, but she seems to be improving.
Update #2 - Saw the GI last week. He thinks that it's most likely IBS on top of the Celiac, but didn't seem too concerned because my symptoms haven't been too severe, and I've actually felt better in the past few months. It'll be back, though. Just a matter of time.
In the meantime, I'll be reading up and figuring out what else to cut out of my diet. Saw my GP today and she was actually more helpful, suggesting probiotics and trying some version of the low FODMAPs diet (I'm feeling that out a bit at a time). Also have to keep up on my iron and B12 supplementation (got really low back when I had that horrible body pain/fibromyalgia/whatever it was incident).
So, aside from emotional breakdowns due to world events, we're doing ok. I've been sticking to my no-nightshade-novermber challenge, but getting really excited to wolf down some potatoes in a few weeks.
(also, anyone know a good IBS forum?)
Thanks for the help and advice and encouragement, always.
I bought 2 big bags of corn chips and some olive tampenade and coconut "soy" sauce and am putting extra garlic and cinnamon in everything. I CAN DO THIS!
(I will not eat potato chips I will not eat potato chips I will not....)
Hopefully this will amount to finding out that a little is ok (ie: chili spices, a few potato chips, a bit of tomato in something) but eating a full serving of it probably not a good idea. I'm already basically not eating tomatoes, sweet peppers, eggplants, etc (they're all out of season now anyway), but potatoes are hard to give up.
Let's do this together! Any spicy recipe ideas sans chili?
I've made a difficult decision: I'm going to try to give up nightshades.
More specifically, I'm going to try cutting them all out for a month and then introduce them back individually to see which give me grief.
I've noticed problems with nightshades over the past couple years. A little seems to be ok, but it's a low threshhold before I have GI and neurological issues (muscle aches, headache, bad digestion). I've mostly cut out tomato, went really easy on the eggplant and peppers this summer, and have noticed problems with potatoes. I want to figure out if I have problems with them in general, or if it depends on how much, how they are cooked, etc.
I'm on day 3. I have a wedding at the end of Nov, so can get in 4 weeks before then. Hardest part is giving up potato chips (a staple in my snacking diet) and, especially, chili in various forms, which ends up in a lot of my food.
Do you have problems with nightshades? What are your symptoms? Did you have to cut them all out, or just some, to see an improvement? Any advice on coping?
Will report back!
(honestly, I give myself 2 weeks max before I cave. I've tried this before)
So, I've been doing pretty well the past month or so, which is a good sign since it's been a stressful fall. Last weekend we were at a camping retreat thing, catered by the camp staff. They did their best to take care of the gluten-adverse, but I probably should have pushed for greater caution, since the gluten-free items were in the buffet next to wheaty stuff, something I normally avoid, and BAM! I don't know whose crumb ended up in my foods but definitely some glutening symptoms the past week. Nothing serious, but fatigue, bloating, nausea, stomach issues, bad digestion, irritability, etc (but, notably, no pain). Of course, it was also the week before my fun lady time, when I've noticed my GI symptoms tend to be worse, and now, for the first time in over a month, some definite IBS-like symtoms (ie: BM pain).
SO, up comes the question again: are my IBS-syptoms just part of my Celiac disease, or is it a separate thing that can be triggered by a glutening? SO CONFUSING!
In any case, I see the GI on Friday, so we will discuss. I don't want to rule out IBS on top of everything else, because non-gluteny things definitely make it worse (whole grains, beans, etc), but it's probably pretty closely related.
Oh, and I did not get back to using the fibre. BUT I have been trying to take my probiotics and digestive enzymes more regularly, which seems to be helping, though I've slacked off recently and that could be making a difference. We shall see.
The GI suggested I try supplementing fibre to help the constipation (GI thought that might be the problem at the time). I got some psyllium husks, but haven't been very diligent in taking it. kept at it for a couple weeks and while I did notice things were moving better, definitely no improvement in other symptoms (dropped off taking it cause I'm lazy). I did read that added fibre might not be good for IBS symptoms (I can't handle too much naturally high-fibre foods anyway). I might give it another shot and see what happens, then I'll at least have something to report back to the GI (it helped, or, it caused more pain).
I have been better at taking my probiotics and digestive enzymes, though, and so far so good.
Yes, I know IBS is kind of a catch-all, or diagnosis of exclusion, but it does fit the bill. I have been, and am continuing to be, extra careful about possible gluten cc. I did get a bad glutening earlier this year while on vacation, which floored me for about a month and probably triggered some of the bad IBS symptoms I had at the time. It's always a possibility that mystery glutenings or lingering damage are triggering IBS-like symptoms, but I'm actually better at avoiding gluten than I used to be, and the IBS symptoms have gotten worse over the past few years.
The colonoscopy I just had was to rule out Crohn's, ulcers, etc. The scope didn't pick anything up, and honestly my symptoms don't match. Not sure if I want to have another endoscopy to have them poke around in my stomach and not see anything.
I suspect that fibromyalgia might also be part of it (the random days when I ache all over and can hardly move). Only recently did I learn that fibro and IBS are often connected. LIGHTBULB!
I also don't eat dairy or soy, avoid eggs, can't eat more than a handful of beans/legumes at once, whole grains are hard to digest, too many nightshades usually trigger joint pain/neuro symptoms, etc etc. I don't want to have to do a full-blown FODMAPs diet, but will if it comes to that.
I still have to see the GI again. IBS or not, hopefully we can figure out some ways to manage the symptoms and deal with the pain when I have it. It's not so much about having a diagnosis as acknowledging that it could be something separate from the Celiac Disease and that I have to do much more than just not eat gluten. Also, if there are any drugs that will help the pain when my gut decides to go into stabby spasms, that would be nice.
I've actually been feeling ok the past few weeks (aside from the colonoscopy horror), and ok so far since the scope ( maybe having your colon flushed out is a good reset button), so doing my best to keep it that way.
Anyway, will update when I know more. Keep adding suggestions if you have anything.
It's been a while. Things have been ok in the gluten department, but over the past couple years I've been developing distinct IBS symptoms: bad pain in my lower left side (from a dull ache to stabbing pain), pain in colon when trying to BM, constipation (generally), occassional blood in stool, and sometimes overall body pain that can come out of nowhere and make me barely able to move for several hours to a couple days. This sometimes happens when I can trace it back to a possible glutening, but often comes out of nowhere, and tends to get worse the week before my period.
So, a couple months ago I had once of these instances of horrible all-over body pain that sent me to my doctor (lasted for 2 days until I finally was able to have a BM). Bloodwork showed somewhat low iron and B12, so have been trying to supplement more (B12 has helped with the nerve pain/aches/fibromyalgia-ish symptoms). My GP also referred me to a GI, who recommended I get a colonoscopy to rule out anything like IBD, ulcers, etc.
I had the colonoscopy yesterday (the prep was HORRIBLE! I was up half the night trying to get down as much as I could. Thankfully worked well enough to do the procedure). Got knocked out (best part!), and when I woke up I did have so really really bad cramping from the air they push through your bowels. Super painful (somehow managed to get home under my own power, but it took a few hours to go away). When the GI came to give me the results, I said I was having painful cramping, and he says "well, that's normal for someone with IBS." That's what I thought it would be, and he seems to agree. My colon was normal otherwise. I'm booking a follow-up to discuss what this means.
My real question is: can you have Celiac AND IBS? It would explain the mystery aches, my seemingly increasing food intolerances, the killer pain, constipation, etc. When I get glutened, it's more likely to be bloating, the big D, anxiety, general tiredness, brain fog, etc.
It seems to generally thought to be one or the other, but does anyone here have both?
Also, any tips for managing your IBS (I know, is different for everyone), what to ask the GI when I see him next, etc.
In the meantime, I'm upping my probiotics and digestive enzymes, taking all my vitamins, increasing soluble fibre, and am going to try to cut out nightshades completely for a while (emphasis on "try") since I've noticed they bother me. Not looking forward to another bumpy road of figuring out what works and what doesn't, but at least I have a better idea of what's going on.
Any information or advice appreciated.