healinginprogress

But they don't itch at all, and look nothing like the pictures when I google DH. I just really hope it goes away

Did anyone's skin get worse before it got better when going gluten-free? I don't have DH, and my skin isn't that bad, really...but what I do have are these little bumps that kind of look like pimples, though not usually pink or red, and if I squeeze them (I know, not supposed to squeeze/pick!), it looks like something should come out but it's just water/clear liquid.

I didn't have very many before, but over the past year as my health got worse, I got more of these bumps...mostly on my chin, jawline, cheeks, upper neck.

I started using gluten-free cleanser and face cream recently and I'm hoping that will clear it up, along with my new diet...maybe I just need more patience, but it seems almost like it's worse instead of better.

Just wondering if anyone has experienced something like this?

YES, thank goodness it was only a couple days of misery with the soy!

I, too, have ALWAYS had very vivid dreams, and I always remember them...a lot of them are very scary or sad, and can affect me for the entire day because they felt so real! I can even feel pain in my dreams, it's crazy. I've also always had insomnia...hoping that will clear up in time sans gluten!

Great about your hubby! The crazy thing is, the dog food he's feeding his dog now (we each had a dog, so now we have a two-dog family) is about the same price. When I brought it up yesterday, he looked at me all scrunchy-faced and was like, "yeaaahhhh, I don't know...he's been on that brand since he was a puppy". To which I said, yes, and mine has been on HIS brand for 5 years (his dog is not yet a year old)! But what I really wanted to say is, "yeah, and I've been dying on the inside since FOREVER!"

SIGH! Anyways, sometimes he "gets it", and sometimes he doesn't. I'm glad that I can vent here, though...it helps me.

And as for withdrawals, I hope that is the case! I just exercised, and the headache is still there

Headaches---

I keep waking up with a headache, and it's hard to tell if it's gluten-related or tension, but really unpleasant, either way. I've been really good at being gluten-free, eating only whole foods and only at home (stuff I cook). I am very tense, but also think my man may have eaten gluten in the bed. I will clean the sheets, but am unsure of a nice way to ask him to be careful if eating gluten in there. Sometimes he's great about it, but I think he's already frustrated with having to brush his teeth before kissing, and when I brought up gluten-free dog food yesterday, he was not very receptive

Celiac Dreams---

This is just sort of funny. Since going gluten-free, I think I've had dreams about food pretty much every night LOL Sometimes I'll be eating something gluten-ous and then "remember" within my dreams that I can't have it and get all worried haha Last night I had a dream that I was going for my appointment with the colo-rectal surgeon and I hadn't done my enema before (so gross), and then when he was showing me what they were going to do for the colonoscopy at our next appointment, he showed me the camera they were going to use and it was HUGE and he said I didn't get any sort of sedation or anaesthesia! I also decided, in my dream, to start eating gluten for the test and was going home to order myself a whole cheesy bites pizza from Pizza Hut......SUCH crazy, amusing dreams!

Helpful Ideas for Elimination Diet---

Just a few things that have been helping me along the way. When I'm out, I've been buying some gluten-free goodies that I'm keeping in my gluten-free cupboard that will be treats when I'm done the elimination diet...it kind of just makes me happy to know that they are there, and this diet won't be forever. The other thing I found really helpful is PRESENTATION! At first, I would just take a baked yam out of the fridge and eat it just like that...which is fine, when time crunched, but definitely gets boring and sort of upsetting. Same with apples and pears. But when I bake my apple in the toaster oven, mix it in with some canned no-sugar-added packed-in-water pears, a little SF applesauce, and some chia seeds...it feels a little fancier and, in fact, is more satisfying than just an apple or a pear on their own. These two little things are making a big difference for me!

Anyways, just wanted to do a little sharing, thanks for "listening", the support is much needed and appreciated!

Are you eating out at places that are celiac-aware? As in, perhaps you're getting cross-contaminated? Also, iceburg lettuce in particular is not easy to digest. But if you're okay eating them at home in your room, I might suspect cross-contamination. I am a nervous person in general, and I find that if I eat too quickly that I get GI symptoms as well. Sometimes just stress in general will give me an upset stomach, but I do find it helpful to really pay attention to my food, chew it really well, and eat a little slower.

I used to think that bad fats made me sick, but now that I had a positive blood test, I know that it was things that were breaded, ie. gluten, and not necessarily the fact that they were deep-fried. I've only been gluten-free for a short while, though, and am on a whole foods elimination-type diet, so I haven't had anything greasy, really. If you're still healing, it might be too much on your system.

I'm not sure any of that was particularly helpful, I hope someone else will have some better answers for you.

The fog kind of lifted (for today at least...fingers crossed!) today, YAY!

It's so crazy to me how debilitating "the fog" really is! I couldn't even do the simplest of things that were anything beyond what I really HAD to do to get through the day!

It would be nice if it's gone for good, but I won't get my hopes up too high. I just try to do all that I can on the days when it does subside, then it makes me feel less guilty on the days when I can't

I think it really depends on how much damage has been done to your intestines...it's different time frames for different people, it seems. My symptoms have progressively gotten worse over the years, this last year being particularly awful and with significant weight loss. I think it's possible that maybe your insides aren't that damaged, yet...but trust me, you don't want to get to that point! Will your doctor send you for the blood test for gluten sensitivity?

Thanks for the replies! I was hoping there was a magic potion or something haha

I did a little bit of exercise which did help a bit with the fatigue, not so much with the fog.

I have the unfortunate problem of insomnia, even if I'm really tired...I always say "I suck at napping" lol, because it's next to impossible for me.

I've been on solely whole foods for 6 days now....WOW it feels like SO much longer haha

I also forgot that it's "that time" in a day or so, and that could probably have an effect as well...I hear the first one gluten-free is awful, not looking forward to it!

Anyways, I guess I'm doing the right things, I just have to be patient and wait it out!!!

oh, I also wanted to say...it does help a bit that there are many others feeling the same way, but what doesn't help is that pretty much nobody around me understands!

The biggest regret I have is in remembrance of all the opportunities I missed because I was so tired/sick/antisocial to pursue them. Not the big opportunities--it would be hard to keep me from keepin' on keepin' on... but the little ones. Not returning phone calls. Declining outings with friends. Reluctance to travel because of the fear that I would feel sick in a place where I wouldn't know where to run to if I got too tired/sick/miserable.

Wow, this is so exactly how I feel...I honestly felt like such a bad person, or at least a bad friend, a hermit, lame, etc. And then I would just get mad at myself, blame myself, what's wrong with me. Thinking I was crazy or why couldn't I be this way or that way. And of course feeling like I was the only person feeling this way...I NEVER for a second thought that it was caused by some underlying problem...other than depression, but then why didn't meds seem to help all that much? Hearing that other people have felt this way and feel better after going gluten-free (even if it takes a while) gives me hope that I will have a life again

Feeling particularly fatigued and foggy today, is there anything that actually helps? I feel like caffeine might, but I'm not having caffeine right now.

I'm turning 29 in a week and a half, but feel MUCH older physically a lot of the time as well I'm a little over 4 weeks gluten-free, and on the weekend I felt amazing! Since I tried to reintroduce soy I haven't felt great, but I'm optimistic that it will return, and I applaud your optimism!

I hope this works out for you, and these boards are extremely helpful!

that foot rub sounds amazing, but i live in australia so we don't have walgreens

i will definately be taking a hot bath for sure!

is it okay to feel sorry for myself too? haha

This may sound strange, but you can probably get it at a farm supply store...bag balm was originally used for chapped cow udders LOL But people discovered the benefits, too My mom has been using it for years, and she still gets it from farm supply because it's cheaper!

I'm a newbie as well...I'm surprised to hear that carbonated beverages help! I would have thought the opposite! And wine? wow!

So far all I know to do is drink lots of water and peppermint tea.

And yes, feeling sorry for yourself can help, too

This thread is a neat one to read through:

Yea I do agree that we should be able to get 'sick leave' or temporary disability if our symptoms are severe. You might want to talk to your doctor about it.

As to adding stuff when you do an elimination you need to add the item for a week OR until a reaction occurs. The reason for that is because it can take time for an intolerance to build up as explained to me by my allergist when he put me on an elimination diet. Obviously you have reacted and when a reaction happens you drop the item.

Awesome Thank you for clarifying!

Thanks to both of you! Yes, it is good I'm finding out early on, you're right. Since I had a reaction right away, I don't think it's necessary for me to have any more servings of it (I read you're supposed to have three servings of the food on the day of reintroduction and then back to the original diet for 4-7 days, noting any symptoms).

But, yeah, the unfortunate part is that I feel like crap and have no idea how long it will last. I took a sublingual B12 and am trying to drink lots of water. I heard that Benadryl might help but I'm not sure I want to take it, yet (any thoughts?).

I think newly diagnosed celiacs should be given a couple months of paid sick leave from work LOL It's really tough to go through this whole process and still be expected to function as per normal.

I guess I'm probably jumping the gun a bit. I just want answers and to not be sick all the time. I've only been gluten-free for 4 weeks. I started the elimination diet last Friday, and on Saturday I finally felt relief and went on a cleaning spree LOL. Sunday I felt great, too. Yesterday I felt more tired and a little off, but still better than usual. Then today I tried soybeans and got sick. I don't really know what to do My elimination diet has consisted of (forgive me if I already listed this, my memory has been terrible): rice, yams, chicken, lamb, spinach, apples, pears, green grapes, cucumber, a small amount of carrots, olive oil, and salt & pepper. I was planning on continuing on this diet and trying dairy in 4-7 days, then corn in another week, and then eggs.

Sure sounds like it bothered you--sorry!!Bummer

How LONG did you avoid it before trying it again?? My doctor said 3-6 mos.

Well I only was just told to go gluten-free because of a very positive blood test, but I was still getting sick, so I thought I'd try the elimination diet and see if I have sensitivities to anything else. So I guess soy is probably a no-no for now, but maybe I could try reintroducing it again in 3-6 months.

This is all so frustrating...I LOVE FOOD! But hey, my life and quality of life depends on it, really.

OKAY.............

I didn't know whether I should share my experience by continuing this post, so I started a new one in "pre-diagnosis" before realizing this thread is still active, so I'll just share here

I don't think I'm okay with soy

BUT after reading the new posts here, I still have hope that maybe soy lecithin will be okay, if I test it out a different week (though I'm not sure how to isolate it in purest form?).

Here's what happened: had a bowl of edamame at 11:15, by 12:15 I had D, a bit of nausea, and my stomach hurts quite a bit.

So disappointing!!!

Should I still have it again later?

Wasn't sure where to put this topic because I kind of have a diagnosis based on a very positive blood test a few weeks ago, but I'm still getting the hang of things around here, so I hope it's ok.

I've been on the elimination for four days, days 2 to 4 I felt really good, barely any symptoms. So today (day 5), I decided to reintroduce soy. I had a bowl of edamame (steamed soy beans)..no soy sauce or anything, just a little salt.

It's about an hour later and I just had D, my stomach hurts, a little nauseous, and feel kinda "out of it".

I was really hoping that I would be okay with soy...but things aren't looking good

Twizzel, you do describe the neurological symptoms very well. I have taken antidepressants, anti-anxiety, and even anti-psychotic meds on and off for years, with little to no improvement. I hate these feelings that I have, that are so difficult to explain, and sometimes you end up losing friends over because you just can't do things that everyone else does because you're stuck in this fog. I've been to such dark places. I, too, have developed some pretty good coping skills for some of the more serious issues I was dealing with, but it's a daily struggle with...myself!

I am only a few weeks gluten-free, so I'm sorry I can't offer any answers as to when these symptoms should clear up. I just wanted to say that I can't wait. It's so crazy to me to think that gluten may have been causing this struggle for so long. It makes sense by way of the GI problems I have, but I never knew that untreated celiac disease could result in neurological problems, too. I'm REALLY REALLY hoping I find some relief (I'm currently on two antidepressants/antianxioylytics and another one at night for insomnia), and that YOU DO, TOO!!!

Just a waiting game, I suppose...

I told the waitress I was allergic to wheat and chose safe foods to order.

She was aghast about it. She actually sat down next to me and said, "What? Were you really sick? Oh my God! You should be on Mystery Diagnosis! That is bizarre! Wheat is in everything!"

Wow. Truly awful!! I haven't done the restaurant thing, yet (but I'm lucky that where I live there are several celiac-aware restaurants in town for when I do), but I am still very awkward about bringing it up. I was buying hair product yesterday and said "um, this might be a weird question, but do you have any shampoos and stuff that don't have gluten in them?". He said, "without what?", and I thought OH NO, but I repeated, meekly, "Gluten?". And right away, he was like, "OH! Yes, we do! That's not a weird question", and proceeded to show me a couple lines they carried. Again...lucky.

I think with time one must get more confident talking about it, requesting things, and explaining it. What made me more uncomfortable than explaining what celiac disease was, was when the clerk asked me what happens if I HAVE gluten LOL

But as for the disease itself, I think it's probably best to go with "I have celiac disease, it's kind of like a wheat allergy" and then explain more if pressed for more info. People seem to understand "allergy" better than "sensitivity" or "intolerance".

I keep telling myself I should feel lucky that the treatment is "just" going gluten free and that it's not cancer or some equally horrible thing, but I can't help feeling bitter and sorry for myself. I feel like I've had enough bad stuff in my life (haven't we all), and I don't want to deal with this.

AGREED!!!!

Right now I'm just eating whole foods, BUT...

I separated the gluten-free food and put it all in a cupboard under the kitchen counter. I told him he could have whatever he wants...but this particular cupboard is a little harder for my very tall man to get into

We're both getting better with dealing with everything, though. One of the more difficult things I've come across is not being able to taste-test my cooking if I'm preparing him a gluten-y meal!

(P>S> I don't even like tofu, but soy is in everything, so hopefully, I'll be able to tolerate again at some point)

LOL same here...I rarely eat tofu itself, but soy IS in everything, that's also why I am hoping I can tolerate it! Especially soy lecithin, it's everywhere!

So I'll go with some soy beans. I also just read a bit about tempeh which is fermented whole soybeans, which is apparently more pure of a soy product than tofu, but I think sticking to the actual whole food is the best bet to ensure I'm not reacting to anything else

And I will keep you updated, thanks for the advice!

I know it seems like a silly or very simple question, but I wanted to head to the grocery store before work and was planning on buying tofu, and then looked up tofu ingredients, and it's not just soy(beans) or soy and water.

I know it's supposed to be in it's pure form, so should I eat soybeans (edamame)?

I just want to do this right, it's easy to feel very lost in all of this. Thanks for humoring me

(PS: I'm trying it tomorrow, so I'm hoping to buy something today)

I've pretty much been cleaning for the last two days straight...which normally would sound AWFUL, but I am so happy!!! I haven't cleaned (like REALLY cleaned, only bare necessities) in SOOOOO long because I've been too tired and/or too sick, that I have just been doing what I need to survive. But I'm on...day 3 I think (?) of the elimination diet...okay, memory still sucks LOL...and the past two days I have felt pretty great Seriously, I want to sleep in my bathroom it's so clean LOL

I don't want to speak so soon, but I'm excited. I'm also starting to understand some of the frustration I've read from other posters about not getting diagnosed sooner...those feelings of missing out or wasting time because I've just been sick, when maybe all I needed to do was cut out some foods??! It seems so crazy. I think I'm younger than some people being diagnosed, but still upsetting, seems like "lost time".

Anyways, I just wanted to share some GOOD news finally, because I was in a very dark place merely days ago.

**thanks for all the support I'm gonna keep at it, if I feel good again tomorrow, then I think I will try reintroducing soy on Tuesday!