anonymical7

Yeah, my wife has been going through everything and trying to catch the hidden ones. Now I am pondering whether I should invest in gluten free stock somewhere... Schar?

  carecare said:

Ha, I just posted basically the same question. My husband had such a bad reaction and I wondered if they get worse once you are gluten free. I now know they do. Wow, now to work on making my household gluten free...ah...

CC

Thanks guys for your feedback, i guess its live and learn.

Have a good holiday! A

Hi All, its been a while since I wrote. I self diagnosed my problem and have been enjoying a gradually better and better life now that I now what was hurting me. It was a miracle. But Like most celiacs I have been surpised and on recent travels deeply frustrated at attitudes at some restraunts and even friends. Granted they dont know much better, and we have to be our own police.

I am writing mainly however because as of yesterday and a week ago in NY I was accidentally glutened and the reactions were like a bomb going off in me. The first time, caramalized sugar turned out to be a process caramel syrup and yesterday a processed parmesean cheese with some filler. Anyhow both times it was like a nuclear gluten cloud. First I felt pain spread through my chest, then it was as if I felt even pain going through the whole system. This then turned into instant exhaustian and immediate need for sleep, and finally dizzy and unsafe out of focus clouds of confusion.

My god, before when I was unaware of being celiac and eating it regularly it seemed bad but not this violent. Is the immune system just freaking out since i have been avoiding it so long? Also I have started having freaky twitching sessions all through my face and jaw and eye area afterwards. Thats just odd and a bit embarrasing...

Anyhow, I am here laid out like I ran a marathon but the exhaustion is something else.

Last point is that while in NY and Philly i went to many restaurants. Two I asked if they could make the food gluten free. Both said yes but then said, " A little is okay isn't it?" So frustrating this attitude and being un-aware.

A

Yes, we cook in most of the time but this kind of resulted as the final nail in going out. Today on the other hand we went to a Barcelona store that had "celiac safe buns" I was asked to make my special hamburgers. For the others however they got normal buns. Upon getting home and sitting down later to dinner we tried them and they fell apart like sawdust... incredible that they're even sold. I would not buy them if my life depended on it. At least the store (Makro) had the option of celiac products but really, I wish there would be quality control too.

All that said I feel so much better after the night of getting hit with the fallout of the black paella. Stomach pain, the runs, but after a night of rest I was okay. Its always like that but seems to be getting worse the longer I am away from gluten. As long as i am gluten free its all golden.

Hey all,

Not much of a complainer but I am in Barcelona and my wife and I were hoping for a good restaurant moment when we dropped by one that was recommended. We ordered the black paella (arroz negro) and octopus. We had our celiac card info saved on our iphone and it explained in spanish at least what the things were to look out for. The waitress called over an old codger who perhaps ran the place. He said, no its just fish, and the other ingredients... no other things. He swore it was okay. My wife and I had warning bells going off about the broth, but we decided to trust the owner or head waiter. Within 5 bites I started heartburn and congestion and sure as heck I was on my way down the gluten rabbit hole!

Ugh, anyhow, I am about to give up going out to eat. We love food but I cannot afford to get hit with these things. When we do have to go out we are going to bring along tamari from now on, and when I have to, just eat unseasoned grilled things and fruit.

Addressing Testing, just FYI, If I had to do it over again I would be tested, however I dont dare to eat any gluten again based on my reactions. Its just too terrible to go back.

But I am loving life being off it.

And uh, my wife is much happier too knowing I am not always in a stupor and more alert!

Oh man, I had no idea. Well thanks for letting me know. I use all kinds from Old Holland to Rembrandt and some cheaper brands....depends on whats needed. I will keep an eye out.

Hi All,

The mind fog was like a cobweb sitting over my brain. I would have trouble processing information, and seemed strangely enough to focus more in my immediate area visually. Like I was struggling to just get around. Thats been strange being off gluten, its as if I can see further, but its simply a clearer head I think. I was diagnosed with ADD, and thats still there but feels different than before.

Imagine hearing a highpitched whine all the time, it blocks out information around you from coming in because you are pre-occupied. But this you dont hear but you can imagine then its just the effects of being one step removed from being clear or seeing/hearing clearly. You are being poisoned.

Thats the best I can describe it.

As for paints I use all kinds but oil paints. I use gloves and have a fan in my studio for exhaust, have never had problems with checmicals except some of the super glues or resins for casting. But I dont use those anymore...

I just wanted to report in and say despite me not being tested I have witnessed a miracle since going gluten free!

1. Acid Reflux/Heart Burn- Gone
   
2. Dark Circles under my eyes- Gone
   
3. Bleeding from the end...- Gone
   
4. Extreme Fatigue- Going (I can now go out more easily and dont feel like only one outing in a few days is the max)
   
5. Irritable Stomach-Gone
   
6. Uh, gas problems-Gone
   
7. Mind fog- Going/Gone
   
8. Skin Appears Healthier according to my wife.
   
9. When experiencing hunger it appears to feel like what normal hunger must feel like. I used to always feel starving.
   

Now, all that is good, but changing to a gluten free diet has been challenging. I keep having to go out for dinner since I am an artist. There are business meetings, dinners after openings....it seems restraunts are the most dangerous, they just aren't careful enough. I have twice been struck with some ingredient they did not see. Or they were lazy, used the same pan etc... but luckily its never as bad as eating something straight up wheat based.

Yeah for me it was thinking I was Hypoglycemic, once when I was on the short end of money, I reverted to just eating sandwiches, basically wheat overload. I lost 20lbs in one month and had heart palpitations. The dietician showed me a food chart! She said I was not eating enough...well, I was eating okay, just all wheat based things.

I stay away from sugars in general, with exceptions for dark chocolates 70% and higher. You have to watch those for glutens too I guess. But my normal eating now consists of primarily fish, eggs,tofu, chicken, some beef (once a week or so). I keep carbs just within reason, and eat when I have too, but I do eat nuts for snacks, sometimes cheese. I make sushi, salads....

It seems to be working, but I also bike around often, walk, and occasionally swim. I was eating all the time, and double quantities, then falling asleep and feeling drugged. Its amazing how things have changed. Its great you found out too.

Oh cookies....very tempting, but chocolates my seduction.

A

  bigbird16 said:

I've noticed the same. I used to worry about getting enough food when out and about, was always hungry and getting woozy if I didn't have food every couple of hours. While eating one meal, I was thinking of the next meal. Now (gluten-free since Nov.), I like to eat, for sure, but I don't have much interest in food. I eat much smaller portions when I'm hungry, which is around three times/day, and maybe a snack or dessert at night (not usually, though). If work gets crazy and I have to miss lunch, it's no big deal. It's nice not to be a slave to my stomach. Weightloss here hasn't been as much as hoped, either, but then again I haven't been moving about as much lately.

Tastes have changed, too. I used to eat a lot of pasta and cookies. I like gluten-free varieties of both, but mostly have no interest. Me turn down a cookie?!?!?!? Yep.

Oh, it was just the wheat in the sauce I think. I am okay with other soy products, thanks for you comment. A

Yes thanks, I am just 35 and thought, well I am getting old, but everyone around me was not having the same problems...

So I have been gluten free now for two months, and I wanted to state not only has my constant mind fog dissapeared but I seem to be seeing farther. Or rather, I have the feeling I am seeing farther. For years, and especially in the last 3 it was as if I would look only 50 feet from me. As if my brain would register a "sight zone" at a certain distance. Now, for some reason I see the full spectrum, looking in the middle area but seeing well at a distance.

The other day I accidently had some soy in a supposedly wheat free meal and I was hit again with the fog. For the first time I even felt dizzy grabbing the wall after leaving the restaurant. Why do people forget about soy sauce. I am going to start bringing my own sauces.

An analogy is something like when you hear a high pitched noise, but this is as if it is a noise that sits over your brain and then your vision is tweaked just enough for you to be focusing merely on the immediate.

Anyhow, I am an artist, so its been nice to have my vision properly returning. I was diagnosed with ADD over a decade ago but now I am wondering if it was just celiac disease...

Amazing, I have been gluten free for almost two months now and I have noticed something nice. I am eating less and very gradually losing weight. I almost always used to get 2-3 portions, at least two at each meal. Now I find I can stop after one serving! It occurred to me that this could be that I am getting my nutrients that I long was without. I am taking a multivitamin too, but this has been nice. I am down about 10lbs, and it is just very slowly going down.

Have other people experienced this? Just curious, but happy.

update, it seems I started something across my family. One brother who suffered the same symptoms, with bleeding, dark circles under his eyes, extreme fatigue, depression, also eczema and other things tried going off wheat for 3 days and some of the symptoms stopped. He was convinced enough to get tested, hes a bit more skeptical and loves junk food so he is just going to get a blood test. That will happen in a couple weeks.

I'll be curious to hear his results to see if this runs in the family. Its a bit eerie, its the first time we talked about our health (typical men) and he mentioned all sorts of other things that we had identical. His symptoms seem far worse, his eczema is far worse. I had just a bit here and there, but his was getting worse. However I live in the EU and eat pretty healthy anyhow before I figured out I was positive for celiac symptoms. He on the other hand lives in the U.S. and loves loves loves junk food which is loaded with glutens.

Anyhow, i am still so amazed! I had some soy sauce today and felt a little under the weather. I looked at the ingredients, sure enough, wheat....Im going to be more vigilant.

Thanks for the supportive reply. You know there was a period 7 years ago where I lost 25lbs in like 6 weeks, I had heart palpatations as well. I was checked out and they could not find anything wrong with me at the time. But again they had not done any bloodtests, just heart monitoring and although they saw it, they thought it must be somehow generated by stress, which looking back could not have been the case...anyhow, yeah I understand the need for correct diagnosis, but at this stage, I equate it to eat this feel like I am run over by a truck- avoid that and feel like I am normal and energetic! I did just tell my brothers to get tested because they have some of the same symptoms I do.

Is this ever misdiagnosed as Chrons Disease? I ask because my father is diagnosed with it, which is why i had endoscopy when I had problems before, but I again that was negative. I always secretly suspected that it had more to do with something else because doctors never really found a way to keep it on the mend with him However, recently he went on a special diet about a year ago that was avoiding simple sugars and flours due to his diabetes, and they said his Chrons disapeared. Anyhow, interesting...

I will avoid the stuff that makes me feel like the walking dead and my wife feel like she has to take me around on a stretcher.

Well I say internal but it was some more bleeding from...well the end. I will see about a doctor again. I did see one several years ago and had a colonoscopy but they said I was fine. But they did say it might be an allergy. I dont know why they did not do any blood work. Yeah, I just feel so much better and do not have the problems I had before. I'll see about the doctor... I was screeened for Chrones though, and came up okay.

Thanks, but im afraid now to go back since I had such a bad reaction to trying Rye. Is it really worth getting exposed again?

Wow, three weeks ago I started the south beach diet and within 5 days I started feeling different, internal bleeding stopped, IBS stopped, heartburn disapeared, I had more energy, and most interesting it is as if I can even see farther. Before it was like living in a fog. Even my ADD seems to be better when I am off wheat products.

However this weekend I tried some Rye Bread and I have been knocked out again for two days, all if it has started to come back. I thought I was allergic only to wheat, but apparently its all gluten.

The exhaustion was the most devastating thing for me. As an artist I would have to save up my energy when teaching or working in the studio, 2-3 hours of work and then crash. It was a fluke that my wife urged me to try the south beach diet, and we totally discovered this by accident.

I just wanted to write and tell those people who are stubborn to pursue this, that this is very real. I get people who roll their eyes when I tell them. But I have twice the energy that I used to have, well, not at this moment, I am layed out now recovering from the Rye....

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