dani nero

I am off Prednisone for 2 weeks now but I am seriously thinking about getting back on it because my skin is so bad right now. My dh is most serve on my FACE so I cannot risk it getting worse and scarring. I need something to work! I am going to just try what I was doing before because trying all these diets is driving me crazy and it has not completely gotten rid off the problem yet. I know pred is not safe but neither is the way this dh is making me feel. I honestly dnt even care if this pred. kills me I just want to be able to have a normal looking face again! Yes I make my own kefir it isn't store bought. I dnt know where to find water kefir and I do not have any more time to wait on a delivery. I do not eat at a cafeteria I cook all my own food. I have class tonite and I do not even want to go because the dh has gotten so bad. I need something that will clear this up by mon. I cannot keep trying to take foods out and then break out AGAIN! I need to be normal so that i can live my life again and get things done.

You really sound stressed, and stress will make things worse for you. Many people with DH have expressed that stress can provoke their DH when it's active, making it a lot worse, so try to relax. It's always better take it a step at a time.

I know you want this to stop, and you want it to stop now, but believe me it will get better, and we are all going to see this through with you until you start feeling better. These thoughts of wanting to die are probably caused by the reaction you're having as well, so keep in mind that these negative thoughts are not your own, but your illness speaking.

I'm sadly the least experienced, but I know that are others who will have amazing advice for you.

Have you talked to tutors by the way? You have to explain to them (before you start missing too much on class assignments) that you might need some extra time.

Explain the problem, and try to find others who have celiac at your uni. They might have good suggestions on food and money issues.

I think that is tbd. Generally, its in two different spots but I've been known to get some general nausea and d from pms.

I have belly cramps and uterine cramps. I'm lucky.

Sorry hun ;-( Hope it passes quickly. I sadly have the least experience about anything so don't have any input, and my sense of humor seems to have lost it's way recently. All I can do offer hugs. Would it help to just lie down? That's what I'm doing today. Let your family take care of you for the day!

I'm sorry if I'm going to sound harsh, but I don't get this ridiculous attachment to food. There is more to living than eating. Yes there is a chance she will never get symptomatic, but what if she will? Let me tell you that I WISH my family knew about celiac when I was 11 and had no symptoms yet, then I wouldn't have to be going through what I'm going through now. It's always hard at first, but once you're used to it you stop understanding what the big deal was about. Being "normal" depends on each person's perspective, not the majority's.

I'm speaking for many of us not just myself. What will you tell your daughter if one day she ends up unable to workout from being too weak, or if her body gets covered with itchy watery blisters? "Sorry hun but I couldn't bare the thought of you not enjoying your bread"?

I know I'm sounding insensitive, but I can't understand why you let food dictate the quality of your life. Simply read around the forum and see what some of the these people are going through, and the solutions they have come up with be able to blend in and live happy lives without feeling too sorry for themselves. It would be really nice to avoid living a life with countless unexplained symptoms that have a mind of their own.

Too much acid in my stomach. I used to have a terrible time with it when I was younger but it went away the last 10 years or so....

and acid pain is similar to period pain?

what are acid problems?

Sorry you're not feeling well, and that there are too many things to consider and can't figure out which :-(

I don't know what it is but stomach tied in a knot sounds like pms to me. It usually comes with lower back/ side pain :-( I also got my period yesterday and have spent my morning lying on my back.

Can't you take any painkillers?

OMG ....You poor people!

Like celiacs wasn't bad enough!...

I was wondering what all this talk about sals was....OMG...I'm sorry I asked!

I don't EVEN want to KNOW if I have these sensitivities!And I scratch myself BLOODY RAW....especially in my sleep! I'm still trying to deal with the celiacs..caisen...semi-soy(I'm still in denial on that one) and don't forget NIGHTSHADES! Ladies...you HAVE my sypmathies!

By the way...anyone ELSE break out in little redpinpricks....My Dr.can't figure it out...and noone HERE has heard of that one...so far! I've had THAT problem for years...even had a thread on it...no luck! It runs on my Dads side of the family...(he is a undiagnosed Celiac in denial!)

I'm sorry to say Cougie, but the "form" of your DH seems to be the same as mine. I don't get the big watery blisters, I only get little reddish ones.. and if I'm lucky and there's no itch with the blisters they can actually show up for a little over a day then disappear.. unless I itch them, which means they'll scab and scar.

It runs in my whole family, and they all have a NEED to blame it on stress alone, because if they did happen to listen to me it would mean having to giving up their precious food.

What foods are high in sals? I'm eating almost nothing now. I have only had bananas, almonds, cranberries and I tried eating chicken last nite. THATS IT! I cut out soy a weeks ago...the reason I think its candida is because 1. I seemed to get a yeast infection at the same time my dh started getting worse. 2. When drink kefir w/ raw milk I only got new sores when glutened. I was eating tons of iodine with no reaction but get a reaction to the slightest amount of iodine now. 3. All the foods that exaggerate candida also exaggerate dh. I'm gonna try to get rid of this candida and see if anything changes. If not I will try the low sals diet.

Drop the milk (and all dairy), because you've been gluten free for only three months and shouldn't be having dairy/ lactose. You can't digest them anyway.

Your problem might be candida, or it might be sals.. but it also might be both. My suggestion is to do a diet that takes care of both problems to avoid wasting your time. Start from basics. Eat only lettuce, carrots, celery, onion, garlic, sunflower or safflower oil, and all types of unprocessed meat for 7-10 days, and when you start feeling better, start adding back one food every three days.

Your diet seems high on salicylates. Read all the links posted to you by squirming.

Bananas, almonds cranberries and chicken were your food last night only.. I meant can you list everything you've been eating for the past two weeks, not just last night.

Also (silly question) but have you made sure you've decontaminated your house from all possible sourced of gluten to avoid cross-contamination?

Have you been reading around the forum? So much information on the boards for the grabs, but you need to do some reading of your own. When I first found out I had celiac I spent six weeks doing nothing but reading about it.

You might also want to read through this thread

I have severe Dh, tried dapsone and it made me break out in pinpoint red dots all over my body. I have been gluten free for 3 months now and it seems like my skin is getting worse. I am on a low iodine diet and it has helped but I'm still breaking out! I'm starting to think is caused by candida. I seemed to get a yeast infection at the same time I my Dh started getting worse. I cut out my kefir(probiotics) because I wanted to go low iodine. I am also getting of a course of prednisone which help get the Dh under control. I have no clue what else to do now and this is really getting me down. I am barley eating anything because it seems everything makes it worse. I have no more money to spend buying ANYTHING because of all the money I've spent trying to treat this. UGH PLEASE HELP ME!!!!!!! This sis driving me nuts I dnt even wanna wake up anymore!

Can you make a list of everything you've been eating?

I have a feeling that most of the foods in your diet as well as most of your hygiene products might be high on salicylates. It turns out that going all "natural" doesn't suit some of us :-(

I also thought I had a candida problem, until Prickly advised me to read about sals, and my DH was better within days of eliminating sals.

Also have you made sure none of the medications you've been using contain anything you might be reacting to?

I just love peoples reactions:

Hahahahaha :-D

But I've been low sals sooo......

You can come play & have fun anytime you want to Dani!

Your hubs deserves not to get kisses since he was responsible for being a bad boy & getting you glutened. What kind of bunny do you have?

He's a Netherland dwarf / lionhead mix :-)

I guess that even if sals are cumulative, the symptoms don't get that bad unless you've been having a mountain of them daily.

Dani, we always need a sane and sober person to drive .

I dont normally pms that badly but my doc put me on that dang estrogen/progesterone cream and it is terrible. I stopped it a few days ago because it's time for my period and I had terrible ovarian pain (it's the estrogen not the progesterone doing this).

I don't think I'm doing the estrogen next month. I'll go back to just progesterone.

Anyhow ...I think the whole ai thing makes pms worse sometimes for me. I also had/have Endo so that's another thing...and all ai is supposed to be worse at certain times of your cycle....

I'm just a bundle of joy.

I remember I had terrible dizziness, vertigo, racing heart, paranoia, anger, sadness (duh, my pits were on FIRE) etc. when first going gluten-free if I did something that activated my DH. I don't know what was the chicken or the egg, but generally the DH came with an assortment of joyous problems.

Hubs is a saint (and a live one because I haven't gutted him).

Oh.. hormone treatment is not a walk in the park :-( *big hug*

Why do you need it, and is it permanent if you don't mind me asking (you don't have to tell though :-)

Speaking of racing heart, mine is usually kindof calm, but I notice sometimes that it gets louder (I feel it beating) and not racing but faster than usual (around 70 bpm) together with shallow brearh.. do you have idea if this is normal or should I be paying attention to it?

Sorry for deviating from your subject!

You two are having fun over here. I want in!

I don't drink though.. I'm no fun I guess :-)

So glad to hear you're feeling better Squirming! We barely ever know what it is that is going on in our bodies sadly, but I checked my food diary to see if my symptoms resemble yours now.. To sum it up, I had fatigue, sores, moodswings, cold symptoms as well as infections, itching and bloat before removing sals, and then there is emphasis on super fatigue and some dizziness the days after together with some of the previous symptoms. Perhaps it was a bad sals attack and not glutening.. it is a sals intolerance after all, and this means it will hopefully go away quickly :-)

I don't know why but I try to remain optimistic as long as there is no swelling. Swelling to me indicates long-term symptoms.

PricklyPear! I'm also going to get my period very soon, and I've been a nasty grouch monster for the past few days! I'm not nice to my hubs at all, and I boycotted any kissing until my gluten symptoms are gone(his punishment for bringing the gluten into the house).. I am being very careful with my bunny though because he's too sensitive haha :-)

I got my period on the 25th last month, but it seems that the times are shifting every month.. maybe my body is shifting to it's natural time of the month!

You know what's funny? I don't get reading dyslexia, I get speaking dyslexia! Words will come out with letters switched. Makes for some pretty funny stories....!

You should document them :-D

How are you feeling today squirming?

Sores at the corners of my mouth went away when I stopped using toothpaste and mouthwash. I checked with my dental hygienist and she said it was really the brushing, not the polish, that cleans teeth. 2 years, 2 more hygienists and 2 dentists (we moved) have all confirmed that my teeth are fine (I floss 1x/day and brush 2x/day).

Not that it couldn't also be b12/iron issues, just that this helped me a lot! Full disclosure: I am consistently, barely below normal levels for my iron (have been since childhood).

Good luck!

On exercise, check out the greenling post with lots of responses on this sports/fitness forum about starting workouts again - consensus is that we recovering celiacs may need more rest days than we used to for our muscles/bodies to recover. So think about bicycling but perhaps not as many days a week as you would have 'once upon a time' - see how that goes.

Hi Babysteps :-) Thanks for the recommendations!

It's sad but true, the moment we found we're gluten intolerant, was the moment we became responsible for our own safety, that includes situations with ignorant people. I know it's depressing, but yes, we are responsible for their lack of knowledge and lack of attention because otherwise we'll live a life of being glutened. I learned this lesson when my own husband glutened me once, and almost glutened me a couple of other times. He never thinks because he's not the one going through three weeks of recovery.

I'm not saying that other people will never care, my mom is amazing, she thinks of everything and doesn't put a single spice in food without checking. She always makes dishes I am able to eat and she thinks of things even I don't think about.

What I mean is that you can't expect everyone who doesn't live with this to be able to stop themselves from being absent minded, because that's not how their minds are programmed to think when they don't deal with it every day.

When you're visiting someone or someone comes over, you NEED to wash your hands and everything that has to do with food that is going into your mouth before you put anything in your mouth. You'll save yourself a lot of misery and you'll be free from blaming others. It's stressful I know but feeling healthy, happy, and light on your feet is worth it.

I really know how you feel, I also gain a whole dress size when I get glutened, and I become a grouch-monster!

Yeah...but the wonderful thing is ALL the NEW FRIENDS we have from all over the world!

I'm in california,some of us are in florida,texas,ohio,missouri,chicogo,NewYork,Canada,Astralia,Ireland,England,Germany and your in sweden! WOW!And we can talk all we want! If you want to talk more personally with anyone in perticular...send a personal message, if you need help with that or navigating your profile...just ask!

And yes...you would think our Hubbys would be thrilled at all our new knowladge and discoveries...but after a while...no! Personaly we thought I had Multiple scolrosis(MS)

for years...I had all the symtoms(like 97 out of 100)! But he RUNS if I start talking about it NOW! Yes personal message is fun... and you can just talk, about whatever...without everyone reading if you want, but having everyone two cents is great fun too! Its a great way to meet people you haven't talked to yet! and if you REALLY gety along with someone FRIEND them!

It's ALL good...and we're all in the same LEAKY boat! HaHaHA!

Like i've said before...I've learned more from this site and these wonderful compasinate people than any Doctor! Except how to spell maybe...funny thing is the spelling gets better the less glutened I am...LOL...I can tell if I've been glutened...I cant remember how to spell things! ...How wierd is that!Anyway...can you explain what the term "SALS" is...I never did an elimination diet...I've been pretty much on my own...DR.s no help!The doctor who dx me is a specialist and too expensive...I have no insurance!My regularDoc isn't THAT helpful..but he isgoing to doa bloodtest on metosee wher I'm lacking noutrishion wise...I'm having...ISSUES!!!

Cougie what a sweet post!

I also can't spell when I'm glutened :-O Actually I noticed that I tend to become slightly dyslexic when I'm foggy from gluten, too! It's not weird at all :-) Well, maybe we're all weird which makes this place even more interesting! Sals (salicylates) are found in a lot of natural foods like fruits and veggies, as well as processed foods. They're some sortof immunity hormones. Here is a page on sals: Open Original Shared Link

Thinking you have MS is a terrible thing, I can imagine how relieved you were when you found out it wasn't your case :-)

Prickly, I am not eating anymore Quinoa. Lesson learned! I DO wonder if this may be a temp. thing though & maybe I can have it back somewhere down the road 6, 8 mos. or a year down the road.

itchy, You didn't specify if you have the whole body having been glutened feeling or if it's only the dh flaring. Can you clarify please?

Let's see Dani --- hunger, fatigue, anger/borderline, HEAVY brain fog, dizzy, achy, flu-ish sort of feeling, & some occasional sharp abdominal pains -- short lived each time. No C or D but a couple times I hung close to the bathroom thinking I might have to run to it quickly. Some gas whereas I had been having none. No swelling except for dh skin spots but no belly swelling.

That sounds terrible Squirming! I pray that you'll get well faster, and hopefully you will.. specifically since your body isn't swollen. It's probable that reacting to quinoa isn't the same as reacting to gluten. Get well, rest a lot, and take some time off watching guilty pleasure shows.. Something that is fun but doesn't require any brain-work.. Mine was Judge Judy at some point *blush* >.>

Go on long walk in a very quiet and nature-rich place that contains a lot of eye candy to calm your moodiness, and keep us updated on how you're feeling!

Hello there.

Have been gluten free since about Feb 2011. Not eaten bread, cereal, pasta or bread for some years as it makes me ill so gluten free wasn't a big deal. Felt MUCH better for about six months then slowly began to feel much worse. Back to stomach cramps, the big C alternating dodgey D, headache and truly terrible nausea with repeated close shaves for throwing up while out - not good.

I think soya is a big problem for me (nearly as bad as gluten) so cut that out, followed by potatoes, rice and all other grains and the dreaded dairy. Have not been able to give up milk in coffee!!! Can't eat any processed food (presumably from soya)and also have trouble with bacon, sunflower oil (migraine) all dried fruit and balsamic vinegar. I have a horrible feeling there are other things aswell.

The last six weeks I have really gone downhill and am so cheesed off with it all. Got glutened from some very good oil that I put on two ponies to help sweetitch - it's really good - but contains wheatgerm oil. Gives me all the gluten symptoms including a burning nose - guess I touched it!

Just need to hear some words of wisdom really - sat here bloated, pounding heart and miserable - sorry to moan.

On the up side have used celiac.com for the last year - brilliant, thank you .

Have had no official diagnosis but have had symptoms for 35 years, and Hashimotos (use natural thyroid hormone)since age 16 and DH since same age that is pretty much confined to scalp now and varies in severity. Also saliva test (adrenal hormones) showed the antibodies (can't remember the name) for gluten and recommended gluten free.

I'm sorry but I'm not an expert.. but since I was feeling quite poorly as well, I would suggest that you go on an elimination diet like I did. Eliminate everything you're eating except for very basic things that you know don't make you sick.

I started with veggies and red and white meat, then in about a week, added one food every three days.

I found I was reacting to so many things, and specifically foods that are high on sals Open Original Shared Link

I remember that post, a lady stated that she added her first food back that made her sick, and it was quinoa!

I have not reacted badly for a long time, but I do feel your pain and frustration! I'm really sorry you're not feeling well :-(

I don't think though that you should rule out sals as the culprit though.. When I was reacting to them I was very moody as well! What other symptoms are you experiencing other than the hunger, fog, DH, and mood-swings? Any C or D? Are you swollen?

If the soy sauce didn't say it contains wheat or gluten then perhaps it was gluten-free? :-)

Cheer up, I think you're doing great. We all have family members who are stubborn, it's because they want to see everyone enjoy food. My aunt tried forcing me to eat a piece of chicken that was laying on a piece of bread once. It was a horrifying experience because she looked like she was going to get upset and I really didn't want to upset her. This is YOUR well-being, however, and you need to look after it. Perhaps call in advance next time and ask if there are any specific ingredients that you would need to bring yourself, so that (for example) you'd bring your own guaranteed gluten-free soy next time!

Relax and don't worry. What I did when I first started was that I kept the unsafe foods list that is provided by this website on my mobile phone, so I would have it with me everywhere I went. Reading labels is something that becomes second nature to you later so don't worry. Enjoy the fact that you're going to feel well from now on :-)

Hi I'm new here. Trying to read as much as I can. I've learned so much from this one thread! Wow! You all have so much knowledge and have so much to share. Thank you so much.

Several years ago I had terrible diarrhea-type episodes (so sorry for the description). Early last year was the worst. I found Heather's Acacia Powder for IBS which I determined that I had been dealing with. It helped with the rush to the bathroom episodes.

I went to one nurse practitioner when I couldn't get in to my regular NP for an extremely burning rash around my neckline. Plus I also had other spots on my thighs. She (the NP) took cultures for bacterial or viral. Almost 2 weeks later I got a call that the cultures were neither.

About 1 week after the 1st NP I went to my regular NP who thought the rash was Urticaria. She even had a physician come in to look at the rash and he "confirmed" urticaria. That was March 1st. Even tho I explained that the blisters were similar to cold sores since I'm prone to them, I didn't get confirmation from the medical "pros". I understand that all physicians are not well versed in skin conditions.

In the meantime I've read as much as I could about what could be causing the rash. "Wheat Belly" was the book that explained exactly what DH is and the blisters I've experienced! I'm self diagnosed with DH. I've been trying to eliminate gluten from my diet. I was doing pretty well but last week had gluten free waffles with coconut oil and organic jam instead of syrup. Holy cow what an eruption event I've had. I initially attributed it to a very stressful week at work.

After reading your posts about salicylates I've done more research and find that coconut oil and jams are probably the culprits! What an eye opener!

It's so nice to find this forum and read of your experiences.

Who would have thought that the "natural" way of doing things and eating would be so detrimental to our health! I've eaten gluten all my life so I'm still in the dark as to how this all evolved. I'm trying to eliminate as many things in my environment that can impact my DH. It's not been a pleasant journey but with the knowledge I'm gleaning here I know more of the things to look out for.

Thank you all!

Hugs,

Peg

Glad you found the source of your problem :-) and welcome!

Sunflower oil then Dani? Sunflower oil is low sal. Also Canola oil but sunflower oil is better for you than Canola.

Can't believe how easy it is to miss posts! Thanks for the suggestions Squirming!