dani nero

I feel like that is one of my biggest signs that I've somehow ingested gluten. I just get super mean to my mom and the littlest things set me off. Is anyone else like this?? I've been trying so hard to not have gluten and somehow I got some on accident. Also...any suggestions on what I can do to not lose weight. I'm dropping weight like crazy.....

Yeap. Irritability, anxiety, depression, and even panic attacks. Irritability always comes first for me .. which is how I can tell I got glutened by something. Last time if was nailpolish.

I think that the best thing you can do is eat things that are high on energy but won't damage your health.. Maybe nuts dipped in honey, dark chocolate, avocado salad with lactose free cheese and so on.

I CAN do oats and that is TERRIFIC news!!!! I will hunt the net for some recipes!!!

Thanks tons!

VERY encouraging news to go to bed with.

Glad to hear that! You can put all sorts of things in the bread like olives and dried tomatoes to give them an Italian flavor.. or even raisins so they're like english cake. I bought a bread maker two days ago and it included many gluten-free recipes. It's great since I can have fresh bread every day with very little work, and costs a lot less than ready-made bread :-)

Just to be on the safe side (although you probably already know) so you don't accidentally get glutened: the oats need to be labeled gluten free.

I've been gluten free for 2 years now, I'm a self diagnosed celiac but there is a very strong genetic link in my family. Both my grandpa and father have been diagnosed. Currently I'm suffering from low energy and kinda a feeling in my head that is similar to a low sugar condition after exercise. I find myself fatigued after the end of a general day of work and completely exhausted after a hard day of work or play. I did have a relapse on gluten 2 weeks ago accidently eating a sandwich that was made from wheat bread, could this still be affecting me?

Also I know I'm not getting enough calories during the day, I find it very challenging to get enough calories each day I think I'm currently eating about 1,000-1,500 a day. What I eat is always healthy but I'm finding it hard to get up to 2,400 calories a day eating gluten free. I'm feeling discouraged right now and lonely in my struggle even though I have supportive family it's still my struggle. Perhaps a community like this will be comforting.

Does anyone else just feel dizzy and fatigued, or am I just loosing it!

Fyi I'm 32 male 6' 160#

Since you're self-diagnosed I'm guessing you didn't check your vitamin/ mineral levels or if you might be anemic.. or your kidneys and so on to make sure everything is working?

Last year I was cold day and night.. people would look at me like I'm some kindof loon because I would look like an Eskimo wearing a winter coat in class.. even though I ate so healthy and exercised regularly I was still always tired and cold. It turned out to be anemia.

The amount of calories you consume is not hard to remedy. Lots of healthy foods out there with high energy like nuts, potatoes, or dark chocolate.

Right now I am: gluten-free, CF, corn-free, egg-free, peanut and tree-nut free, and brown and white rice-free. Most legumes are out but processed soy seems alright so far. Am also in trouble with salicylates as I am allergic to aspirin. I react to all meat, and am allergic to shrimp. Also react to all food from the "mustard family" which kills a lot of veggies, and the veggies and fruits that are not out so far are out when you add in allergy to latex and the cross-reactivity that causes. Finally, I am trying to stay refined sugar-free and just go with maybe stevia or brown-sugar if I really need something for a recipe. No WONDER I have not felt well in decades!!!

I keep chasing around when I am trying to look for ANY kind of recipe that is not soup soup soup. Blech. If it has no rice it has corn. If it has no corn it is not gluten-free. gluten-free and CF? Then it has eggs.

Here is what I really want--something chewy and/or crunchy that is NOT a vegetable or fruit. I want a piece of bread or a bagel or something.

And I want something silky/fatty feeling.

Ant ideas? I will go look at that Namaste someone mentioned--not even sure what it is!

Can you do oats, yeast, and any type of lactose free milk (soy, almond, coconut or cow milk with extracted gluten)? If yes, then get an oat flour mix and a bread-maker. Lots of recipes with only these ingredients + oil, and it comes out very moist and soft. Doesn't even need reheating because it stays soft and in-tact. You can do so many things with oats if you don't react. Cookies, pies and lots of bread types.

Sorry to hear about your limited diet :-( I'm almost in the same boat as you but not as bad since I am ok with all types of meat and rice. Hope this helped

Hi Dani,

About 10% or more of celiacs react to oats as well as wheat, rye and barley proteins. You won't know if you are one of those 10% or so unless you eliminate them for a while and then challenge them. Eliminating oats means eliminating BRM products a they produce oat products in the same area as their gluten-free grains.

Sorry about the peanuts. You can make the brittle with tree nuts instead, like almonds, or add sunflower seeds or sesame seeds. or ? Coconut goes well with it too.

All nuts, seeds as well as beans are unsafe for me until the doc has determined if I'm getting any G6PD symptoms or I'm simply a carrier. Problem is we don't know what exactly was making me anemic (the gluten or the g6pd).

I'm not familiar with BMR products.. what falls under that category?

This is actually a little awkward but I'm going to ask anyway... is getting bloated by a food an indication of intolerance, or that the body can simply not handle digesting that food yet until it has healed? Or do there have to be other symptoms with the bloat?

Believe it or not.. nailpolish was the culprit.

I have a not very good habit of trying to fix accidentally smudged spots on my nails by licking them.. As much as this is embarrassing to admit I thought I'd share it anyway as a warning.

Which products do you use which you know are gluten free? I'm specially curious in terms of lip gloss.. haven't dared to put any since I started.

Oranges, grapefruit, and peanuts. Actually I am experimenting wit some candy right now to see how it goes. I used to make peanut brittle sometimes. Pretty easy to do.

Are you sure oats are ok for you? Have you tried eliminating them for 30 days?

Yeah I don't think I'm reacting to oats, is that uncommon for someone who's been gluten-free for a few months? I don't have immediate reactions and my symptoms are somewhat sneaky.

I love fruits very much but sadly started to get tired of eating only them. Peanuts are legumes so they're off the menu.

I think you get used to it over time, but you will feel deprived in the beginning. So go a bit crazy and get it out of your system is always the best idea. Once your mind realises your new diet doesn't mean deprivation, you don't want them as much.

Thanks for the advice. I have never had any problems eliminating gluten from my diet because it was just one thing and there were so many substitutes, but now I'm really struggling with legumes and lactose because they're in almost everything.. If I'm going to be serious about this though then almond flour is off the menu ;-( I'm finding that oat flour is not bothering me though so I'm using that, unless I still don't feel better when I finally succeed with eliminating lactose and legumes.

Even though I'm feeling crappy by waking up untested every morning with a foggy head, and my sinuses are acting up I still eat nutella in the evening or my favorite lemon-cream fish sauce. I'll try to be more creative with my recipes and hope what you're saying works.

The almond and coconut flour are totally different in recipes than corn and potato starch so you'd have to look for other recipes. They use a lot more eggs and oil, especially the coconut flour ones.

You might try some coconut flour recipes if you can tolerate coconut and skip the almond. As well as the recipes at Simply Coconut there is another huge list here. Open Original Shared Link

Thank you so much Skylark

Thank you all! I appreciate your input very much :-)

xoxo

I haven't visited the doc yet because I'm waiting to be registered at a new clinic, so I don't know what supplements I might be missing :-(

I'm a little because I got reddish burning sores on the corners of my mouth. They burn when I laugh or try to open wide while eating (lol)and they hurt a little ;( Are they a lack of something or even related to GI?

I also got this rash that I used to get on my finger before. Can it come back on it's own without getting glutened? I have been careful but perhaps I ate something that was CC at a coffee shop or something. It itches a little but mostly burns and produces cracks in the skin and blisters.

By the way, even if I go to the doctor about this, I really doubt he/she would be as competent as the people here :-P

Can you do eggs? I love baking with almond flour and coconut flour since I don't handle grains very well. I make coconut flour muffins and add whatever looks good. Nuts, spices, blueberries, raisins, etc. Open Original Shared Link

Almond flour banana bread is another favorite.

Open Original Shared Link

I love the coconut flour and almond flour baking. Stuff comes out moist and rich and I never miss regular flour the way I did trying to work with starches.

I really love bananas and coconuts! Thank you for the tips! Would it work as well with corn and potato flour though?

I think almond is ok but I'm sadly not sure yet since I didn't get that far with the elimination diet yet. I got diagnosed with G6PD when my husband and I did compatibility blood tests. I never confirmed whether I'm symptomatic or simply a carrier yet as I'm still waiting to get written to a new clinic. Problem is I was on everything and now I'm on nothing haha :-) hard to tell what was causing what.

Thank you for the links :-) I'll check them out!

Everyone feels like that in the beginning, but it's not the real you speaking, it's actually your addiction to all those harmful foods that is reacting and protesting.

It is hard in the beginning because it's a big change. It's never easy, and nothing worth the effort is ever easy, but believe me it's worth it. You'll soon learn that a home-made burger or pizza is 100 times yummier once you find the perfect recipes that you can't resist. This is an opportunity for you to find out that restaurant food is not the best there is flavor- and quality-wise. You will actually get disgusted by junk food when you get used to natural, healthier alternatives that make your life brighter because your mood and health will improve thanks to them. You'll actually start wondering in time: Why on earth did I spend all those days poisoning and slowing myself down?

You'll get used to feeling well, and once that kicks in, you'll not care about all the things you left behind :-)

I've decided to remove soy and legumes from my diet as well, since I'm not feeling as well as I did when I had nothing to eat except rice, meat, and greens.

Just curious to know what other people who are off gluten, soy as well as other legumes, and lactose have when they decide they want really yummy and filling treats? :-)

I had an amazing gluten-free oat and carrot baguette for dinner just now! It was so yummy I didn't even care about not having anything to fill it with! What are your favorite snacks?

it's like saying rice porridge isn't real because you didn't use oats haha.

Honestly you were being nice by not laughing at her intelligence. You're the one who did her a favor :-P

First off, happy birthday.

Reading your post was so heartbreaking! It sucks to feel left out or forgotten. I'm so sorry you had a crummy party and yes what you went through is very understandable and sympathized with. You're a very sweet person for being patient with your family.

Some websites state that the best solution is to bring your own back-up food with you. I find that a little hard to do specially when the hosts have put a lot of effort in arranging everything, but it's still better than getting poisoned.

Hope all your coming birthdays go smoothly! Xoxo

Thank you for this post. I have mild ADHD and OCD as well as amenorrhea and a few digestive issues. I didn't know that the OCD could be linked to the intolerance as well.

Anyone know how long it takes exactly for the neurological symptoms to subside?

My family and I are considering a permanent move from the United States to the Aramco facility in Dhahran, Saudi Arabia. Does anyone know of the availability of reliable gluten-free foods at grocery stores and restaurants in that area? Thanks

Hi Tamtam. I have been to Riyadh but not Dahran. There were plenty of gluten-free sections at large supermarkets like Danoub, Carefour, Lulu, and Tamimi (Safeway).. The restaurants and shops have no idea what gluten even is though, so they know nothing about CC or hidden gluten in sauces. It's up to you to be safe if you choose to eat out.

Also not all foods are imported from the US or Europe, so you have to be very careful with hidden ingredients when grocery shopping and reading labels. Good luck!

One thing you REALLY have to be careful of at supermarkets is that they actually mix organic-foods with gluten-free ones, so it is very easy to pick whole-grain organic pasta or wheat flour by mistake.. Even same brands which offer both whole-grain wheat flour and gluten-free flour mixed up on the same shelf. Make sure that each and every thing you pick is checked and don't take anything for granted. Dust them off when you get home in case of CC if you're super sensitive.

Maybe annoying is a strong word , but my family does not listen. I wrote a letter to them all (over 50 relatives), provided information about gluten intolerance and celiac, and they know how this thing tried to kill me for several years, yet they do not listen. Only my Mom went gluten-free. She feels great!

That is the beauty of such threads, Dani--you never know what someone will see and take away from it!

I am so glad you joined the forum! -- and I hope you are more accustomed to the many acronyms we use now BTW?

I'm glad to be here as well! and yes I'm not so confused anymore :-)

xoxoxoxoxoxo

I put it together myself. 35+ years of symptoms--all from celiac. And that is why I am a very VOCAL crusader for celiac awareness and I don't give a flying fig if anyone finds me annoying.

But we should not "hijack" Dani's thread--this is her celebratory moment! If you wish to read more about neurological symptoms, check the Related Disorders section.

You are not annoying and if anything being vocal is inspiring.. I feel very awful for my family who are not willing to let go of the poison they're eating (gluten), and I wish I was as vocal as you but I'm not that strong personality-wise.

I posted this thread out of joy to begin with but I think that providing others with information on different cases and symptoms is far more productive and helpful.

Oh hon, I made peace with all that stuff a long time ago. What's done is done. Can't be undone. Just learned from.

Believe me,there is no one who is more of an optimist than I am.

After all I have been through, I'm still kicking and screaming and laughing .

My focus now is on TODAY and getting well and getting my life back.

Besides, there is no point in looking backwards, as that is not the direction we are headed.

Cheers,

IH

Good to hear that :-)

Despite many attempts to regulate my own cycles and control some nasty Peri-menopause symptoms with BC pills, it just made things worse.

I wonder if I had known about the celiac back then, how much easier all if it would have been.

I wish you and UKGail all the best. The only thing we can do when we no longer have control to change the situation is accept life with it's imperfections, to be able to see the bright side of things, and focus on what's to come :-) My heart goes out to you. xoxo

You're just having some withdrawal symptoms, it means you're healing :-) Everyone gets worse before feeling better, so think of them as a positive thing.

IH has posted some good information and very appropriate for this thread. But, aside from any gluten or Celiac issues, extended use of birth control will diminish you menstrual cycle.

Hi Lisa! In my case the amenorrhea wasn't caused by the BC pills. I took them to induce periods. I got diagnosed with hypothalamic amenorrhea when I was 16. The first doctor was the one who diagnosed me, and prescribed BC pills (Diane 35) as treatment. The second told me there was no point in taking treatment because I was completely healthy, and "it is not even necessary to bleed every month".. I didn't listen to her. The third doctor diagnosed me with PMDD and put me on different BC pills (Yaz) + Paroxatin for the anxiety.

If you read a book called "Eating Less: Say Goodbye To Overeating" by Gillian Riley, she states that when you are aware that some food are forbidden, then your mind gets fixated on breaking free because it's aware of the new restrictions. The book can probably help you regulate your eating so you don't put on any weight without dieting. Hope this helps!