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Member Since 09 Jul 2013
Offline Last Active Jun 18 2014 08:18 PM

#911093 The What's For Dinner Tonight Chat

Posted by on 01 April 2014 - 05:31 PM

Hi errbody! LTNS...Life is really busy these days! I hope you are all well.


Dinner tonight:

Mashed garlicky cauliflower

Sukuma Wiki (Kenyan Braised Collard Greens and Ground Beef) recipe here if you're interested: http://thedomesticma...beef/#more-4993


I've been drinking ACV in a little water before each meal and I gotta say, it really helps digestion. Anybody try it?

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#911092 I Think I Have Celiacs Disease And Dh Rash. Please Help!

Posted by on 01 April 2014 - 05:24 PM

Now that I think about it, my WORST flare happened after I went strictly gluten free. The last day I ate gluten was May 31, 2013. On about June 8th the rash spread for the first time to my tummy, and all the other areas were redder and angrier than ever before. Pure hell! About a month after that was when I got a new little spot on my inner thigh. Was it cc from my newly-gluten-free kitchen? Or was it just the time it took for the antibodies to make their presence known? I'll never know. This rash is the most mysterious, fascinating and infuriating thing I have ever encountered. A year does seem like a long time if you have been very strictly gluten-free. But if there is ANY bit of contamination, that may be all it takes for the rash to appear. (But sadly, is likely not enough to get you a positive on a blood test)


So, two things: You know gluten is bad for you. If you need to a dx then you will have to do a gluten challenge. Only you can decide if you are up for that. And, you need a new doctor, one who will be supportive of you and what you know to be true about your own body, dx or no.

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#911027 I Think I Have Celiacs Disease And Dh Rash. Please Help!

Posted by on 01 April 2014 - 08:51 AM

I also have IBS and anxiety and DH. The IBS cleared up almost immediately after going gluten-free.  Someone on here once told me "IBS is NOT a diagnosis, it's a symptom". Basically, when a doc says you have IBS, they are just telling you what you already know! The anxiety still waxes and wanes, but is much better. And the $%&#ing rash is still with me, but MUCH, MUCH better.


To answer your questions:

1 - Yes, the test most definitely could have been inaccurate. If you want to get tested again, you will have to eat something gluten every day for a few months, and even then you may get a negative. How important is a dx to you? You can read more about the "gluten challenge" here: http://www.curecelia...-celiac-disease


2 - Is your household gluten free? How strict have you been with being gluten free? I am not questioning your intentions, mind you, but just trying to get an idea of the potential for getting cross-contaminated and possibly making mistakes. My DH showed up after I cut way back on gluten. This was 4.5 years ago when I started seeing my boyfriend. He was/is gluten intolerant so I just ate what he could eat, and cooked what he could eat, which meant most of my meals were gluten free. I would still eat gluten containing items infrequently, when I went out or something, and I was never too concerned about cross contamination (because I did not know I had a problem!) Does this sound at all like your situation?


3 - See #1


4 -Go through all of your toiletries and such with a fine tooth comb and eliminate anything suspicious. Some people say that you cannot absorb gluten through your skin, but why risk it? Also, there is anecdotal evidence here that people are sensitive to lotions with gluten in them. It's just not worth it!

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#906863 How About Stress?

Posted by on 22 February 2014 - 05:00 PM

Hey there w8in!

I just wanted to out in my 2 cents:


Back in November and December I was having a really hard time dealing with stress - not just big STRESS but little everyday things were freaking me out. I was just so frazzled and felt ready to burst in to tears or throw S#&% at the drop of a hat. So, I enacted some really careful stress reduction protocols for myself:

- 2 hours before bedtime, turn lights in the house low and turn off computer. Read something relaxing, drink tea. Minimize stimulation.

- Take a hot bath with epsom salts right before hopping into bed. Epsom is magnesium with is very relaxing for the body.

- Get into bed earlier and at the same time every night. I started getting into bed at 9:30 every night.

- Walk outside every morning, rain or shine. Even just around the block.

- I also took some supplements prescribed by my Naturopath - L-theanine, magnesium and ashwaganda

- Avoid tv and the news like the plague

- No sugar or caffeine (even chocolate had to go, as it really wired me up!)


And it worked! About 3 weeks of this routine and I was starting to feel better. I still follow most of these practices today because they really work for me. You may have to figure out what would work for you, but I recommend checking in with yourself to see what might be causing stress/overstimulation.

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#906862 Coming Up On 9 Months gluten-free And 7.5 Months Li

Posted by on 22 February 2014 - 04:45 PM

And I just wanted to check in/report/send you all love and hugs.


I am doing really well. Like, REALLY well.  :D  I keep saying to my family that I feel like a new person - calmer, more focused, waaaay less anxious than ever before in my life. I stopped the Xanax back in December and have been enjoying this new calm in the center of my being. It's wild. I hope it stays! And my digestion is impeccable - too bad it's not something you can really share with people...well, outside of these forums anyway. :lol:


The rash still comes and goes but it is so much less of a problem: less itchy, flares clear up quickly, no big blisters, smaller hives in general. I am hopeful that the purple-brown spots will fade in time, but honestly, I can live with it. Looking like a leopard-human hybrid is a small price to pay for feeling as good as I do.


And finally, I want to apologize for not being around very much. When I first started coming here I was so thankful for the kind and loving support that I said to myself "You need to make sure you pay it forward when you are better and help others here." But, you see, one of the wonderful things that came out of this horrible, scary, chaotic last year was that I decided to go back to school for Nutritional Therapy Training and that is keeping me VERY busy. So, I am sorry to not be around, but know that I am thinking of you all.


To the newbies struggling with DH: IT DOES GET BETTER! Take heart, you will get through this. Love your body, it's an amazing vessel. Feed yourself simple whole foods so it can heal optimally. (If you'd like to read a good and not-too-lengthy book on optimal nutrition, check out Eat Naked by Margaret Floyd) Sleep, slow down, drink water. Time and patience are your best allies.


Love and BIG HUGS!

(Much Less Itchy) Abby


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#900012 How Do You Deal With The "haters"?

Posted by on 17 December 2013 - 03:33 PM

A well-known gluten-free blogger just posted about this subject today! She calls it a form of bullying: http://glutenfreegir...eave-7th-grade/


I don't have any good answers for you about how to deal with it, besides what the others have already said. It's a real conundrum. My Dad went gluten free after my dx and he is feeling great (more energy, no more edema in his legs, no more apnea, no more reflux). He told a colleague - a doctor, mind you - that he wasn't eating gluten and this colleague scoffed, asked my dad if he actually believed that stuff and told him that gluten-free was a hoax. Oy.


So, it's a big problem all around - ignorance, is a big part of it, yes, but I think people are also scared and extremely resistant. They don't like the idea that something so beloved (and frankly, addictive) to them is being ridiculed/cast aside/what-have-you.

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#899326 One Week gluten-free, Feeling Worse - Tell Me It Gets Better

Posted by on 11 December 2013 - 07:57 PM

It does get better! Everyone told me this 6 months ago when I first went gluten-free and I just had to believe them. The first month or two were really hard and then I started noticing a few more good days here and there. Now at 6 months, I am feeling hopeful and the bad days are fewer and farther between.


Your body is working hard at healing right now. Time and patience ad more time and patience. You need lots of rest, lots of water and simple foods. I second the bone broth suggestion - make it with marrow bones and or chicken feet to get lots of gelatin for tissue repair! Drink a cup a day at least. Sweet potatoes, pears, bananas - soft foods might be best for a while. And maybe eat small amounts. You could try making some congee - it's really easy and nourishing. Are you taking a probiotic?


You are doing a good job from the sound of it. I know it's hard. I was there not to long ago (though with different symptoms) and I felt hopeless and scared. I just hung on to the words that people here told me. Time and patience. It will get better. Hang in there. *gentle hug*

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#898719 Floaters - And I'm Not Talking About Vision

Posted by on 08 December 2013 - 12:05 PM

Ohmygoodness, I love you guys! *spazzy clapping*


My poops have been so good, like frame-worthy, and I am so glad that I can tell someone! And you'll cheer me on when I do (do)! :lol:

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#897087 Finally Diagnosed And Wondering If I Have To Live In A Bubble...

Posted by on 24 November 2013 - 01:35 PM

I self-diagnosed myself gluten-sensitive about 5 years ago.  I had horrible symptoms (bloating, nausea, gas, fatigue, migraines etc) and did a ton of research before figuring out it had to be wheat- sure enough, after cutting it out I got better.


I never considered Celiac Disease.  I just assumed I was extremely sensitive to gluten (and who isn't these days, wheat is so modified and terrible!) and actively avoided it.  So, while I avoided eating things like bread and pasta, I would occasionally eat soy sauce, or have oats, buy from the bulk bin and I have eaten out almost daily as I travel, am busy, and live in studio where cooking is a pain.  I recently discovered that my entire family on my dad's side has Celiac disease. I was having some symptoms and so I immediately told my doctor and was tested.  The results were positive for carrying the gene (I only did genetic testing since with my symptoms and family history the doctor thought it would be enough to give a pretty accurate diagnosis- I didn't think I could handle eating the gluten required for the other tests).  I know the diagnosis isn't 100% accurate with only the genetic testing, but I accidentally ate gluten a week ago (was an item off a gluten free menu that they did not make correctly and they used wheat crust) and I was so sick I thought I might die (that's the most wheat I've consumed in years).  So- symptoms, genetic test, and the fact that everyone on my dad's side has it seems to be enough for me.... should I eat gluten and get the other tests?  I don't feel that I need to but I suppose maybe some people here will have thoughts on that...


I've done a lot of research in the last week a on living with Celiac Disease and it seems that you should never eat out, never eat from the to-go section (Whole Foods hot bar etc), never eat any food that was produced in a facility that also processes wheat, never buy from the bulk section etc...


I do not believe in eating processed foods- so pretty much the entire gluten-free section is out for me.   (I find I react even to gluten-free oats and corn as well- cross-reactors) I'm thinking I need to cook all of my meals from scratch in a gluten-free environment- is this what you all do?


I spend almost all day in someone else's house and the kitchen is filled with gluten products-there are crumbs everywhere and the kids are always baking (which seems to make me ill, flour in the air?) I also feel ill when I have to cook pasta for the kids or make them sandwiches and touch the bread..I know this is not in my head as I was experiencing this prior to my diagnosis (maybe I have a topical wheat allergy as well).  I'm now frantically washing my hands (because what if I touch my mouth etc!)


I'm afraid to even heat up my own food in their pots or oven or cut anything for myself on their cutting boards...


Today I was buying veggies at the store for soup and the woman behind me in line plopped down a large bag of flour on the conveyor belt and some flour misted out and now I'm scared to eat my vegetables!!! Arghhh!


I find myself not eating because I'm scared to...I seem to react to nearly all the gluten-cross reactors as well so dairy and eggs are out and nuts, grains, beans as well for the most part....sigh.  I just feel like at this rate I am going to lose every bit of weight and muscle on  me and I'm already underweight.


Sorry this is all over the place...to narrow it down, a few questions...


-What do you do on road trips, or long days where you really don't have the option to carefully prepare your own meals?  Do you rely on certified gluten free packaged snacks in order to have something 'safe' to eat?

-Are there any go-to snacks that are easily portable and healthy that any of you can recommend?

-what do you do when it comes to eating out?

-how careful and strict are you about avoiding any possible source of gluten contamination?

-do you ever feel terrified about food being contaminated? (apparently even gluten-free food likely has some level of gluten)

-how do you deal with people dismissing the seriousness of your disease as if it is a choice or an excuse not to eat!???  (people think I'm anorexic because my diet is so limited and I am thin from not absorbing nutrients- I DO eat -lots of fats like coconut oil and pastured meats, but I just don't eat 'normal' food and being social these days is next to impossible...)


I just feel like nothing is safe and the entire world is filled with gluten!!!!

- I'd pack a TON of food if I am going to be away from my house for extended hours. If I travel it will either  be to stay at a place with a kitchen (bringing my own utensils and cutting boards). I could also see going in a Vanagon with a kitchenette, or in a hotel that has a mini fridge and will allow me to use an electric skillet.

- My current favorite snack is a little mason jar (half pint) filled with a mix of sunflower seeds, big coconut flakes, pecans, and dried mulberries. I also like a mix of cashews, coconut flakes and dried cherries. I like the jar because I can just tip it into my mouth when I am hungry, without having to worry if my hands are clean. Other snacks: carrots and celery; precooked bacon strips, jerky or pemmican (not everyone's taste but I love it); easily portable fruits; jars of pureed soups. I don't really like bars or too many sweets for snacking.

- I have only been out to eat twice in the last 6 months (since dx) and those were both 100% gluten free places. I do not see myself being comfortable eating anywhere else, but that may change. A friend recently had her birthday party at a restaurant that was not 100% gluten-free. I wrote the manager an email asking and explaining and I got a very nice note back telling me that while they would try to accommodate me, they could not guarantee my safety. I decided to go and just have a drink but not eat there. I ate beforehand and had one of my little goodie jars in my bag just in case

- I was truly afraid of food for the first month or two. This is saying a lot because I am a born and raised foodie. But food and I needed to break up for a while so we could figure out how to love each other better. I lost weight and just ate purely for nourishment, not for pleasure - very simple meals. I am happy to report that food and I have fallen back in love and it's hotter than ever. I love to cook and the new challenges are only fueling my inspiration it seems.

- I Am Very Strict. Scrubbed kitchen top to bottom. Did two big purges several months apart - anything that I even remotely questioned was tossed. (actually I gave it all to the foodbank but it sounds more dramatic to say "tossed") I do not let any gluten in my house. I am a little extreme about this, but it's worth it - it would just cause me anxiety, so it does not pass my threshold. I research anything before buying, like nuts and flours, to figure out the best course of action. I buy my meats directly from the ranchers whenever possible, so I know that a minimum number of hands have touched it. I grow a fair amount of my own veggies and the rest I get from the farmer's market. I will not buy veggies at one market in town because their bakery is right next to the produce section. There are flour footprints everywhere. (Like I said, I can be a little extreme - I am still fairly new at this)

- People are ignorant. You can choose to educate them if you wish, or just let it slide. My friends and family know how serious this is - they have watched what it does to me. Anybody else? Well, I just have to decide how much I care to talk about it and whether they are receptive or not.

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#896953 Nuts Dot Com Is My New Favorite Website

Posted by on 23 November 2013 - 10:18 AM

(snickering)  Abbs found her new home :P  Some of our other resident Nuts like Nuts from Nuts dot com.  It is not surprising to find another Nut has found her namesake.  Enjoy your new Nuts :D



I am totally nuts for them! :D


I love nuts.com  They are so prompt!  I order and it seems like I turn around and it's there!

mmmm pistachios!  And they have gluten free almond paste for holiday baking.... can never find that anywhere...last year I had to make it myself

Oooh! Like marzipan? I will have to check that out... thanks!


yeah!  got me some nuts today from nuts dot com - they are ON IT - i ordered them online tuesday night and they arrived today :)  i completely over-ordered LOLZ but i'm sure i will find something to do with (pecans!  who doesn't like pecans!) them  -  they sent a little sample of golden flax seeds, too, i have no idea what to do with them :P and i also got some beautiful sliced almonds <not all beat up and broken like they have at the grocery store) 


the box is even quite amusing ^_^

Isn't it great? Everything is so clean and fresh and good looking. I used to buy all my nuts at TJ's - now those nuts look positively manky. Re: flax seeds: grind 'em up and add them to baked goods or on top of porridge.

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#896031 Best Way To Deal With Servers?

Posted by on 15 November 2013 - 10:45 AM



BUT... I love visiting my daughter in Portland, Oregon. I've had many delicious gluten-free meals in restaurants there. They totally "get it."

That's my city! Did you know that we had 4 totally gluten-free restaurants open up just this year? :)


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#895918 Best Way To Deal With Servers?

Posted by on 14 November 2013 - 02:45 PM

How do I deal with servers? I don't*. It's not worth the risk to me. If I get glutened, I will be covered in blistering hives for at least two weeks and be battling overwhelming anxiety that disrupts my ability to do anything. I'd rather cook for myself and know it's safe, than try to guess as to whether a server is really "getting it". Colleen's response did not seem insensitive to me either - she is just telling it to you straight. There is no "magic formula" for speaking to servers that's going to keep you safe. We cannot make them understand if they do not already.


So, the issue is that you may need to re-orient yourself a bit, socially speaking. I had to and am still working on it. It's awkward, yes, but a small price to pay for not having my life completely disrupted. What are some other things you like to do with friends that do not involve food? Museums/galleries, hiking, music/performance, classes, lectures, farmer's markets... the list is endless. It's easy to think "Woe is me! I'll just have to hide in my house now that I cannot eat gluten" when first diagnosed. But you'll adjust and find new ways to enjoy yourself, safely. I started taking sewing classes and attending a Friday night Sew-cial at the studio where the classes are given - lots of people show up and work on their individual projects, there's wine for those who wish to imbibe and music playing. It's been a great way for me to feel less isolated and I get to bring home new garment I made! You are going to have to get a bit creative with your social activities. This can be good thing.


You'll also get really good at packing snacks to bring with you everywhere. Some of my favorites: pureed soups in a little mason jar with a good lid (squash soup!); gorp (nuts, seeds, dried fruit, a lil chocolate); jerky or I even just pack a little jar of cooked bacon to snack on; fruit; tortillas or naan (gluten-free of course. this is my fave recipe: http://myheartbeets....n-indian-bread/).


And in the event that you do go out, you don't have to eat. Just have a drink and enjoy your companions (eat beforehand and bring snacks)


*Edited to add: Meaning, I do not have to "deal" with servers because I do not go to restaurants that aren't 100% gluten free (My city has a few dedicated gluten-free restaurants, thankfully). Maybe see if your town or city has any such options?

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#895103 Skin Biopsy For Dh

Posted by on 07 November 2013 - 09:38 AM



I am glad you said this again.  I have noticed a trend in posts of "newer" celiacs or gluten intolerants lately.  If a restaurant has a gluten free menu then It must be ok to eat there and people are flocking to eat out all the time.  I think its crazy!  You can choose a gluten free option at any restaurant, that's not the issue.  The issue is in the PREPARATION of that food in a GLUTEN KITCHEN.   Some people are not seeing this part of the equation.  Ok.  Rant over.  And what am I even doing on a DH thread? :lol:



Maybe we need to have something in the Newbie thread(s) about this? (i.e. - do not trust the gluten free "options" in restaurants) The learning curve is SO steep in the beginning and the idea that you can still go out to eat like a "normal" person is all too alluring. I cried so much when I realized that I wouldn't be able to go to some of my favorite restaurants again. I'm over it now, but it was a hard pill to swallow.


I have a friend who has worked in restaurants for 20+ years. She said that she would not feel okay having me eat in any restaurant that was not 100% gluten free. It is exactly as Squirmy says: Roulette. (I am so very thankful that 4 - OMG! FOUR! - totally, dedicated, 100% gluten free restaurants have opened up in my town just since my dx! Did I pick the right year to get Celiac or what? :D Once I get through the #$%ing low iodine phase, I'll be checking them out more.)

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#894934 DH Photo Bank

Posted by on 06 November 2013 - 08:19 AM

Oooo ItchyAbby it really does look very red and angry, no wonder you say its pure misery it must drive you absolutely nuts,
at the moment mine are on the back of my legs and over my derrière too so I can't really photo those, but they are at that sore stage now,

The Gastro Doctor wanted to have a look at my rash,
but when I told him It was covering the back of my legs by my buttocks he chuckled and swiftly changed his mind

I guess some Doctors are still embarrassed about stuff like that , I would have shown it to a medical audience if they would have done the biopsy for me :P
but It just seems so difficult to get biopsied in the UK

I have a patch right on my sacrum and I bargain with it often: "Please, please don't creep down my butt crack, ok?"


It's crazy that your doc is uncomfortable with seeing the human body! Isn't that like, his job? I completely lost all modesty this year - i show the rash to everyone! (Ok maybe not the almost-buttcrack area...)

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#894861 I Am In A Funk

Posted by on 05 November 2013 - 06:11 PM

I have been feeling bad in the afternoons - shaky, nauseous, really tired, irritable. I feel marginally better when I eat something, so maybe it's a blood sugar thingy. But it's hard to eat when I am queasy.


And the #&$%ing rash - just ebbs and flows as it pleases, disrupting my sleep, my work, everything.


I am paranoid lately, totally convinced that something in my kitchen is contaminating me. I keep finding things that I am uncertain about - did I get this out of the bulk bins? Was this certified gluten free? I am loathe to throw them out - this gets expensive! But, I am not using it anyway, so....


I also got a flu shot yesterday and I think it is making me feel even more awful. I am super tired today.


And the anxiety - not as bad as it was before going gluten free, but still there and oh-so-tiresome.




I want my life back. I want to just have one day without itching, anxiety, sleeplessness, irritability, crying, fear and/or just not feeling so great. Just one day. Please.


Sorry for the pity party rant. And thanks for being here to hear me rant. I'm going to go cry now.

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