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MariaOfColumbia added a topic in Celiac Disease - Related Disorders & ResearchWhen Going Gluten Free Isn't EnoughA year and a half ago I was in pretty bad shape. Acid reflux/ constipation/ esophageal spasms/ constant abdominal bloating along with constant powerful burps- such that they interupted sleep / eczema and then my joints started hurting a lot and I was diagnosed with early osteoarthritis and told I'd better get used to it, that this was who I was from there on out.
Since my family has a history of sensitive stomachs, I dismissed all the GI stuff as something I could do nothing about. I'd seen a doctor, and she had no suggestions for me besides losing weight and taking drugs. The arthritis I sighed about and went on. But the eczema was in my eyelids and was starting to get really painful and oozing. There HAD to be something I could do about that!
So, after much internet searching, I found a suggestion that a wheat free diet could help with that sort of thing. What the heck. Maybe it would help.
After a week of no wheat products (you know how hard that is at first!) I suddenly noticed that my GI symptoms had subsided. For the first time in a very long time, my tummy was QUIET. Wow!
So I read up on gluten free diet and decided that must be my problem. I learned how to keep a completely gluten free kitchen and waited for the eczema in my eyelids to go away. A month passed, but no results. After a particularly shameful chocoholic attack, I noticed that the eyelid problem was worse than ever. The light bulb went on, finally. What if it was (oh help!) chocolate?
It was. After a week of no chocolate, my eyelids healed and haven't flared up since. OK, so ... it's gluten and chocolate. After another month, my joints stopped hurting! THAT was unexpected, and quite welcome! So much for you, Dr. Rheumatologist! Telling me there was no hope.
Despite my care in the kitchen and almost never eating out, I kept getting "glutened". I'd be in pain for days after eating the wrong thing. I could only assume that tiny, tiny microquantities of gluten were somehow getting into the ingredients I was using since I kept reading about that possibility on this site. Even gluten free meal mixes bought from a dedicated gluten free factory would hurt me. It was terribly, terribly frustrating. I'd make a pretty good loaf of gluten free bread (NOT easy) and be hurting for days. The same with gluten free pizza. And even the absolutely delicious gluten free carrot cake I developed.
Finally a year later, after getting hit bad by an impossible meal (tuna salad with lots of boiled eggs in it) I started looking for another answer.
After googling "tuna intolerance" I came upon a website about histamine intolerance. After an unbelieving look at the long, long list of foods that histamine intolerant people can't eat, I dismissed it. That couldn't be me. That was just crazy! No one could live like that!
But it kept nagging me. Later that week I had a single boiled egg for breakfast with nothing but water. I reacted. A glass of orange juice a day later. I reacted. Oh, no... it probably was histamine intolerance. As a final test I made some biscuits with rye flour (rye has no histamines, but some gluten) and I was OK. If I'd been gluten intolerant, I'd have been in agony for a few days.
So, histamine intolerance it is.
Now, there isn't a comprehensive, cool, respected website for histamine intolerance. There are a bunch of small ones, mostly in Europe, and the foods listed don't always agree. Of course there are the main categories of anything fermented or yeast raised and tomatoes and wheat and fish and eggs and citrus... but that's the tip of the iceberg.
I went to all the sites I could find and made a master list of ALL the foods listed and spent a couple of weeks avoiding them all. I felt fine. Now one by one every week or so, I try something new on the list and am slowly developing my own personal list of foods I can't eat.
Most of them, I can't. But some on that list I can. And some of them are OK in limited quantities.
And it's not as bad as I thought it would be. Sure, there are times when I have episodes of Poor Me... can't eat what I want to eat.... but I get over it.
Knowing what to avoid and being successful at it is priceless. It's a hundred times better than hurting all the time and not knowing why and doctors just trying to put a drug bandaid on the problem. (Yes, I did see a digestive specialist several times, but she was rather unhelpful.) Histamine intolerance isn't something that's taught in the med schools in the US, I guess.
I've been avoiding histamines for half a year now and I almost never get hurt by food any more. Sometimes I'll try a new thing and have to add it to my personal "can't eat" list (like real maple syrup... who'd have thunk it?) but for the most part my systemic inflammation has gone way down.
I just thought I'd share this. Sometimes it isn't teeny tiny bits of gluten causing the problem. In my case, wheat is just a subset of a much larger catagory of foods I must not eat.
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MariaOfColumbia added a post in a topic First Menstrual Period gluten-free, Feeling Aweful!
MariaOfColumbia added a topic in Gluten-Free Ingredients & Food Labeling IssuesDry Milk PowderI finally used up my box of instant nonfat dry milk powder, but when I bought a new box and got it home, it had that disclaimer below the ingredients... you know the one: This product may contain trace amounts of wheat... blah, blah, blah.
I didn't even think to check the previous box. It's milk powder! Why would there be wheat????
I've been looking online to find if anyone else has that kind of disclaimer and even Bob's Red Mill dried milk says that.
Does anyone know of a safe dried milk powder? I was reacting to the yogurt I made with the previous box of dried milk, so it's pretty much a sure thing that it was contaminated, too. I like how the dried milk solidifies the yogurt and makes it creamier, so I want to keep adding it, but not at the expense of trace amounts of gluten.
Yogurt I made without the dried milk suited my innards just fine, so it's not a lactose thing.
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MariaOfColumbia added a topic in Celiac Disease - Pre-Diagnosis, Testing & SymptomsI'm Coming At This BackwardsI'm 48 years old, and never thought that I might have celiac disease. My father's side of the family has a reputation for having stomach troubles, so I never even considered going to a doctor for mine when they started. It's just part of life, I supposed. Eventually, though, things got so bad with acid reflux, constant burping and esophageal spasms that I went to a GI doctor last year. She told me it was likely due to being overweight and scheduled me for a upper endoscopy and put me on Rantadine. After few days and some scary side effects, I quit the drug and cancelled the appointment for endoscopy. Why pay for an expensive test when weight loss would probably fix the situation?
A few months later, a problem I've had before resurfaced. The crease of my eyelid got sore. I know this seems minor, and I put up with it for months hoping it would heal, but it didn't this time. By August, both eyelids were involved and when I blinked you could see the puffy, angry red lines in the creases. I did some reading and decided it might be eczema and found that eyelid eczema might be helped by a gluten free diet.
So, I went gluten free. Within days my GI symptoms cleared up! I was amazed. I thought I was genetically doomed to have tummy troubles my whole life- and yet here it was.... hard to ignore data like that. I kept at it in wonder, hardly daring to believe it was true (and waiting for the eyelids to clear up) when I noticed something else.
Last summer, I was diagnosed with early onset osteoarthritis. The rheumatologist literally told me, "This is who you are now, get used to it." I did my best to comply.... but after a couple of months on a gluten-free diet, the arthritis is GONE! I have pain free joints again.
I was delighted with the gluten-free diet and started considering the fact that I might actually be gluten intolerant or maybe even celiac. My eyelids didn't clear up, though, and a little more reading about eczema showed common triggers were chocolate. Since I was a chocoholic, and was making up for the lack of decent baked goods with even more chocolate- after a particularly shameful binge my eyelids started oozing plasma. Oh. Crap. It's got to be chocolate. So, I quit chocolate and my eyelids cleared up right away.
So, now it's been a few months and I've been lurking on this site while figuring all this out, and it's probably too late to get real tests done... but in reading more and more about celiac and gluten intolerance, I begin to think I've got a lot more symptoms than I thought.
Lifelong sores in scalp if I use the "wrong" shampoo
Occasional outbreaks on my torso of teeny tiny "hives" the doctor called them
Brain fog & memory problems for the past 10 years at least
the aforementioned acid reflux, burping, and esophageal spasms
Can't sweat unless I take a lot of electrolytes beforehand
A scaly spot on my nose that wouldn't heal for months, but has now gone away.
And my sense of smell comes and goes. I used to think it was due to excess sugar consumption, but it's probably tied to gluten. I haven't had any loss of smell since going gluten free.
Since going gluten free, I've had more and more severe reactions to the numerous occasions of being accidently glutened. Abdominal bloating and severe pain have joined the repertoire of GI symptoms.
My husband is very supportive of my gluten-free diet, so I don't really *need* an offcial diagnosis. However, I feel like I ought to warn my kids- and they have become very sceptical of my numerous self diagnoses over the years. I'll try every home remedy there is for something before going to a doctor, and they have a somewhat justified bad opinion of my attempts to figure out What_Is_Wrong_With_Me over the years.
I had to. Doctors were useless.
Anyway, I'm definitely gluten intolerant if not full fledged celiac, and one or both of my parents probably are too. And probably a couple of my kids as well-- if not all three.
I've told them my condition. Is there a convincing way to tell them they've probably got it too? Or will I just have to wait until they are older and experiencing significantly uncomfortable symptoms and are willing to entertain the idea?
I know I'd heard of celiac disease before, but always dismissed the notion both because I didn't fit the classic symptoms shown in most websites, and because the thought of not having baked yummy stuff was intolerable.
Now I've learned to bake gluten free, and it's not so bad anymore. I was a near expert baker before, and it was quite humiliating going through the learning curve this fall.... but I'm back to impressing people with food again. If only you could try the carrot cake I baked at Thanksgiving. Scrumptious!
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MariaOfColumbia added a topic in Celiac Disease - Coping WithPaper Cut! Am I Glutened?I just got an impressive paper cut while opening the mail at work. This was right on the edged of the gummed area, and I almost certainly got a few molecules of the gummed stuff inside the bloody cut.
Is this enough to provoke an immune reaction? Not that it really matters, though. I've already managed to gluten myself today anyway. But in theory, is opening the mail something I should be a tad more wary of?
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